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She had grown up beside a duckweed-filled pond in rural New Jersey, and by the time she was a young adult, she’d become a neuroscientist in a family of engineers, a theorist among doers.[contextly_sidebar id=\"sXNIfkgjQfMG5MJwfPfkWITgj41OQW8E\"]\u003c/p>\n\u003cp>When she came home during breaks at Harvard, her father would rib her. “He’d say, ‘Yo, you talk big about pure science now, but you’re going to end up an engineer just like the rest of us,’” she recalled. “And when I went to med school, he was like, ‘See? See?’ And it’s totally true. It’s like tinkering. You tinker with the patients. It’s so fun. I love fixing broken machines.”\u003c/p>\n\u003cp>Her neurology work at Massachusetts General Hospital involves plenty of gadgetry — she heads up the deep brain stimulation unit, and sometimes uses electroconvulsive therapy to help patients with depression or mania — but these days, that’s not the kind of tinkering that’s at the front of her mind.\u003c/p>\n\u003cp>Instead, she has been toying with the boundaries of illness itself. She likes seeing patients other doctors have given up on. Many have faced questions about whether they’re really as sick as they say. For all of them, getting the proper treatment — pills or infusions or electrical currents — depends on a kind of collaboration with Flaherty, a workshop in which motivations are re-examined, stories reshaped, turns of phrase redefined.\u003c/p>\n\u003cp>“These poor patients are typically seen as just not wanting to get better, and I got interested in that whole thing, like if you want to get better then you’re sick, if you don’t want to get better, then it’s a vice,” she said. “What was it about us — the caregivers, family members, and doctors — what was it that made us attribute willfulness to people who were obviously miserable?”\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Her schedule is stacked with examples.\u003c/p>\n\u003cp>There was the Parkinson’s patient who was able to move when playing with grandchildren but not when asked to take out the trash. “The spouse is like, ‘Bullshit, you’re just not trying,’ and that’s totally true. … They lack dopamine, which is very important for motivation,” Flaherty said.\u003c/p>\n\u003cp>There was the medical student who’d become catatonic when faced with an exam, and was accused of wanting, at some level, to jettison his career.[contextly_sidebar id=\"FisPQhjLXG17zQFS91fSEnl0b6zkrL5D\"]\u003c/p>\n\u003cp>There was the woman who came in with an anxiety-related tremor but insisted that, no, these shakes weren’t psychological. “You have to convince them, yes, you really are sick, I understand that, or they’ll never trust you,” Flaherty said. “And they are really sick, they’re disabled, totally.” Then, with a careful tweaking of language, she was able to prescribe the Valium that the patient had been refusing from other doctors, and the tremor faded.\u003c/p>\n\u003cp>To some, she might sound like a shrink tucked away inside a movement disorder clinic, and that isn’t entirely wrong. Historically, psychiatrists and neurologists often kept to their own floors, as if the feeling-thinking brain and the physical brain were two different organs. Flaherty was merging both long before it became a trend, explained Dr. Jerrold Rosenbaum, Mass. General’s psychiatrist-in-chief.\u003c/p>\n\u003cp>“When we had a complicated patient … and we needed a neurologist who understood how we think, Alice would be our go-to consultant. She’s a great bridge,” he said. “She’s more sophisticated with the use of our drugs than many of us are.”\u003c/p>\n\u003cp>But that doesn’t quite cover Flaherty’s unique role in the biome of Boston medicine. When the novelist William Styron was weighed down by depression, movement issues, and delusions — he thought that his writing hand had gone dead and his head was shrinking to the size of a pin — he sought out Flaherty.\u003c/p>\n\u003cp>She makes a habit of befriending her patients and counseling her friends. She sometimes worries her colleagues might see her as too empathetic, too credulous, too boundary-breaking. Then again, she knows from her own experience with mental illness that the opposite — an excess of formality, stiffness, distrust — can be worse.\u003c/p>\n\u003cp>Flaherty had heard about Stephanie Zaia before they’d ever met. Clinicians talk, and a case like Zaia’s made them talk more than usual. Her symptoms seemed so strange, and so complicated, that they were picked apart during grand rounds, at medical meetings, and in hospital staff rooms. What struck Flaherty was that her colleagues seemed to suggest that Zaia had invented her own bodily inferno.\u003c/p>\n\u003cp>The trouble began when Zaia was a 14-year-old in Medfield, Mass. She was a competitive swimmer, obsessed enough to make her parents drive her to practices at 5:30 a.m. She swam every weekday, spent her weekends at meets, but all of a sudden, at the end of a race in May 2003, her body went limp and she couldn’t get out of the pool.[contextly_sidebar id=\"YgnHkwDfRuaRza68Zle6mgr7qAhNQXhh\"]\u003c/p>\n\u003cp>Then she began having trouble moving elsewhere, too. Walking became hard. Sometimes she struggled to breathe. She stopped being able to digest, vomiting up almost everything she ate. She began to shed weight that she couldn’t afford to lose.\u003c/p>\n\u003cp>Her parents brought her to neurologists and psychiatrists and specialists of the gut, bouncing from practice to practice, from Massachusetts all the way to Maryland. They kept telling Zaia the same thing again and again: “They’d say, ‘Oh, it’s all in your head,” she said.\u003c/p>\n\u003cp>At first, Zaia and her parents went along with the idea. They probed her past for possible instances of trauma, but could find nothing besides garden-variety middle-school meanness from other kids, which hadn’t gone on for very long anyway. And the suggestions of depression and anorexia didn’t seem to add up with her mounting difficulty to move. “‘You’re trying not to walk because you hate to swim.’ That’s what they said,” Zaia recalled. “They were just like, ‘It’s a conversion disorder: You’re converting your not wanting to do this into physical symptoms.’”\u003c/p>\n\u003cp>No matter what she said, she couldn’t convince them that she wanted nothing more than to be able to swim again. Nor could she convince them, when they claimed her muscle spasms were an embodiment of her jealousy toward her siblings, that she did not feel jealous.\u003c/p>\n\u003cp>Her medical file began to take on an authority of its own, as if the hypothesis that her illness was psychological had, through repetition, become a fact. Doctors couldn’t unearth some underlying cause for the muscle tightness, and could find no relation to the mutiny in her gut. But there, in the pages of her record, was an explanation capable of tying these disparate threads together. The symptoms didn’t make sense, they thought, because she was, in some subconscious stratum, making them up.\u003c/p>\n\u003cp>It was only after years, in 2006, that Zaia got a diagnosis of primary dystonia — a condition characterized by involuntary muscle contractions — and learned just how common this kind of accusation is. “I’ve met lots of patients who spend five years being misdiagnosed,” said Pamela Sloate, a patient activist and board member of the Dystonia Medical Research Foundation. “They don’t have the skills to diagnose dystonia, so they tell the patient it’s imagined, or that it’s caused by depression.”\u003c/p>\n\u003cp>That can have a profound effect. As Zaia put it, “When somebody tells you that enough times, you start to believe it.”\u003c/p>\n\u003cp>Self-blame is something that Flaherty is familiar with. She felt it acutely in 1998, when her twin boys died immediately after birth. They were premature, so tiny their hands could hardly fit around her finger. To bury their ashes, she secretly took a folding shovel into Mount Auburn Cemetery to look for a spot where no one would see her digging. She chose a patch of shrubbery beside a pond grown green with duckweed: It reminded her of the scummy pool back home.[contextly_sidebar id=\"rhuJ5KiqdPloHZe58oqJ8GhRRj1a2q7n\"]\u003c/p>\n\u003cp>Ten days after their death, her sadness morphed into an overwhelming desire to write. She wrote on everything: paper, napkins, computers, her own skin. She’d written plenty before — waking up early to write a neurology handbook while she was a resident — but now it was uncontrollable, and the style had changed. “Looking at this stuff, I’m like, ‘Oh my, God, this is like teen diary garbage,’” she said.\u003c/p>\n\u003cp>She bounced between mania and depression, becoming obsessed with the idea that she’d been a bad mother, that it was all her fault. She knew, on the one hand, that she was sick — she’d been newly diagnosed with bipolar disorder, and was taking a pharmacopeia of pills — but also felt that her illness wasn’t real, that she was just fishing for attention.\u003c/p>\n\u003cp>“The most painful part of it was I thought I was making it up,” she said. “I thought I was this total loser that was making up something that had me in the hospital for nine days.”\u003c/p>\n\u003cp>Sometimes, she couldn’t physically lift her hand to her mouth to take her meds. She’d rock her arm back and forth, coaxing herself, like a volleyball player preparing to make a serve.\u003c/p>\n\u003cp>She was consumed by the doublethink of depression. She knew her symptoms weren’t fictional, but what if they were all in her head? She knew her obstetrician didn’t hate her, but what if he did? She wanted him to say that something terrible had happened. She wanted him to echo her own distress. She wanted him to cry.\u003c/p>\n\u003cp>Flaherty suspected the episode would end her medical career. Her colleagues told her not to tell anyone, but she was manic, and told everyone. She wrote about her illness in her book “The Midnight Disease,” and her story wound up in the glossy pages of magazines. Patients could idly flip through her postpartum mania while waiting for their appointments.\u003c/p>\n\u003cp>“The people who are most afraid of mental illness are doctors,” Flaherty said. “It turned out my patients were fine with it. … One guy said, ‘Yeah, that manic depressive thing you have, my internist has that. … Every six months or so, they have to lock him up, because he runs down the middle of the street naked. But I stay with him because he’s a really good doctor when he’s not crazy.’”[contextly_sidebar id=\"AQvxss0iAWMjp5nhtNV4d3hmbJrV2oIX\"]\u003c/p>\n\u003cp>Even as her mood stabilizers did their job, the impressions she had during illness stayed vivid: her conviction that she’d created her own symptoms, her over-analysis of her obstetrician’s veneer.\u003c/p>\n\u003cp>“She knows from experience how imperious doctors can be. … When you’re really in a lot of pain, or not sleeping, or whatever, in an acute phase, you feel like a supplicant,” said journalist and author Pagan Kennedy. The two had met in a local writers’ group, and when Kennedy experienced a mysterious bout of insomnia and acute pain, Flaherty counseled her not to rush into surgery, and checked in with her every day, listening. Kennedy is now making a podcast about Flaherty’s treatment of Styron.\u003c/p>\n\u003cp>The same skills that cement a friendship, Flaherty has found, are useful clinical tools. But bedside manner hasn’t come naturally to her. “I didn’t have any body language,” she said. “I was brought up in this WASP community with 500 guns in the basement. … We communicated by raising our eyebrows one teeny little tiny bit.”\u003c/p>\n\u003cp>So she sometimes glances at a mirror hidden in among the drawings and plants of her office, checking her own features, making sure she echoes the patient’s devastation or anger or joy. Above all — whether the symptoms are psychological, physical, or some combination of the two — she wants them to feel heard. By now, after years of practice, she says that most of the emotions behind her gestures are real.\u003c/p>\n\u003cp>When Flaherty finally met her, in the fall of 2012, Zaia had been sick for almost 10 years. She needed a wheelchair, and her muscles were so tight she was not able to sit up. Every so often, she’d get dystonic storms: Her back would arch so she couldn’t breathe, her neck yanked backwards, her arms pinned behind her, her legs pulled as far as they would go. “I would turn into a literal pretzel,” she said.[contextly_sidebar id=\"IBjHyTyOkXKgQvZHUH9PFd3FV0V9LNU5\"]\u003c/p>\n\u003cp>The relationship began as pure coincidence. Zaia was an inpatient at Mass. General, home sick from the University of Illinois, Urbana-Champaign, and Flaherty happened to be the neurologist on duty. It wasn’t just the medical crisis that was worrying Zaia’s parents. Her primary neurologist, who had been treating Zaia’s dystonia for years, had put a letter in the medical record that signaled a change of tune.\u003c/p>\n\u003cp>“She was basically saying she had never believed Steph in the first place,” said her mother, Diane. “She basically treated Stephanie for dystonia for … years, and then said she did not have dystonia, and said that she was a wacko.”\u003c/p>\n\u003cp>And so Flaherty agreed to be Zaia’s neurologist. Already, to the family, that was a minor miracle. “No one wanted to touch me,” said Zaia.\u003c/p>\n\u003cp>During those years, Zaia had thought she might end up bed-bound in a nursing home. Now, she’s up every morning at 5:15 to catch the 7:16 train from Dedham into South Station. Her work, at Easter Seals Massachusetts, a nonprofit that provides disability services, is only a block away. She also helps run her own organization, PATH-WAY, which puts together social gatherings accessible to everyone and anyone, no matter their physical ability. To find members, she went to support groups for illnesses she didn’t have. At the end of the day, she catches the 4:43 back to Dedham.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>This\u003ca href=\"https://www.statnews.com/2018/06/19/alice-flaherty-mass-general-neurologist/\" target=\"_blank\" rel=\"noopener\"> story\u003c/a> was originally published by \u003ca href=\"https://www.statnews.com/2018/06/19/alice-flaherty-mass-general-neurologist/\" target=\"_blank\" rel=\"noopener\">STAT\u003c/a>, an online publication of Boston Globe Media that covers health, medicine, and scientific discovery.\u003c/em>\u003c/p>\n\n","blocks":[],"excerpt":"Dr. Alice Flaherty sometimes worries her colleagues might see her as too empathetic and too boundary-breaking. Then again, she knows from her own experience with mental illness that the opposite can be worse.","status":"publish","parent":0,"modified":1529898195,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":42,"wordCount":2530},"headData":{"title":"It’s Not ‘All In Your Head’: When Other Doctors Give Up on Patients, a Boundary-Breaking Neurologist Treats Them | KQED","description":"Dr. Alice Flaherty sometimes worries her colleagues might see her as too empathetic and too boundary-breaking. Then again, she knows from her own experience with mental illness that the opposite can be worse.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"It’s Not ‘All In Your Head’: When Other Doctors Give Up on Patients, a Boundary-Breaking Neurologist Treats Them","datePublished":"2018-06-25T23:00:09.000Z","dateModified":"2018-06-25T03:43:15.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"443021 https://ww2.kqed.org/futureofyou/?p=443021","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/06/25/its-not-all-in-your-head-when-other-doctors-give-up-on-patients-a-boundary-breaking-neurologist-treats-them/","disqusTitle":"It’s Not ‘All In Your Head’: When Other Doctors Give Up on Patients, a Boundary-Breaking Neurologist Treats Them","source":"Health","nprByline":"Eric Boodman\u003cbr />STAT","path":"/futureofyou/443021/its-not-all-in-your-head-when-other-doctors-give-up-on-patients-a-boundary-breaking-neurologist-treats-them","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Even beforehand — before the compulsive writing and the bipolar diagnosis, before the niche medical practice and the best-selling book — Dr. Alice Flaherty stuck out. She had grown up beside a duckweed-filled pond in rural New Jersey, and by the time she was a young adult, she’d become a neuroscientist in a family of engineers, a theorist among doers.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>When she came home during breaks at Harvard, her father would rib her. “He’d say, ‘Yo, you talk big about pure science now, but you’re going to end up an engineer just like the rest of us,’” she recalled. “And when I went to med school, he was like, ‘See? See?’ And it’s totally true. It’s like tinkering. You tinker with the patients. It’s so fun. I love fixing broken machines.”\u003c/p>\n\u003cp>Her neurology work at Massachusetts General Hospital involves plenty of gadgetry — she heads up the deep brain stimulation unit, and sometimes uses electroconvulsive therapy to help patients with depression or mania — but these days, that’s not the kind of tinkering that’s at the front of her mind.\u003c/p>\n\u003cp>Instead, she has been toying with the boundaries of illness itself. She likes seeing patients other doctors have given up on. Many have faced questions about whether they’re really as sick as they say. For all of them, getting the proper treatment — pills or infusions or electrical currents — depends on a kind of collaboration with Flaherty, a workshop in which motivations are re-examined, stories reshaped, turns of phrase redefined.\u003c/p>\n\u003cp>“These poor patients are typically seen as just not wanting to get better, and I got interested in that whole thing, like if you want to get better then you’re sick, if you don’t want to get better, then it’s a vice,” she said. “What was it about us — the caregivers, family members, and doctors — what was it that made us attribute willfulness to people who were obviously miserable?”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Her schedule is stacked with examples.\u003c/p>\n\u003cp>There was the Parkinson’s patient who was able to move when playing with grandchildren but not when asked to take out the trash. “The spouse is like, ‘Bullshit, you’re just not trying,’ and that’s totally true. … They lack dopamine, which is very important for motivation,” Flaherty said.\u003c/p>\n\u003cp>There was the medical student who’d become catatonic when faced with an exam, and was accused of wanting, at some level, to jettison his career.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>There was the woman who came in with an anxiety-related tremor but insisted that, no, these shakes weren’t psychological. “You have to convince them, yes, you really are sick, I understand that, or they’ll never trust you,” Flaherty said. “And they are really sick, they’re disabled, totally.” Then, with a careful tweaking of language, she was able to prescribe the Valium that the patient had been refusing from other doctors, and the tremor faded.\u003c/p>\n\u003cp>To some, she might sound like a shrink tucked away inside a movement disorder clinic, and that isn’t entirely wrong. Historically, psychiatrists and neurologists often kept to their own floors, as if the feeling-thinking brain and the physical brain were two different organs. Flaherty was merging both long before it became a trend, explained Dr. Jerrold Rosenbaum, Mass. General’s psychiatrist-in-chief.\u003c/p>\n\u003cp>“When we had a complicated patient … and we needed a neurologist who understood how we think, Alice would be our go-to consultant. She’s a great bridge,” he said. “She’s more sophisticated with the use of our drugs than many of us are.”\u003c/p>\n\u003cp>But that doesn’t quite cover Flaherty’s unique role in the biome of Boston medicine. When the novelist William Styron was weighed down by depression, movement issues, and delusions — he thought that his writing hand had gone dead and his head was shrinking to the size of a pin — he sought out Flaherty.\u003c/p>\n\u003cp>She makes a habit of befriending her patients and counseling her friends. She sometimes worries her colleagues might see her as too empathetic, too credulous, too boundary-breaking. Then again, she knows from her own experience with mental illness that the opposite — an excess of formality, stiffness, distrust — can be worse.\u003c/p>\n\u003cp>Flaherty had heard about Stephanie Zaia before they’d ever met. Clinicians talk, and a case like Zaia’s made them talk more than usual. Her symptoms seemed so strange, and so complicated, that they were picked apart during grand rounds, at medical meetings, and in hospital staff rooms. What struck Flaherty was that her colleagues seemed to suggest that Zaia had invented her own bodily inferno.\u003c/p>\n\u003cp>The trouble began when Zaia was a 14-year-old in Medfield, Mass. She was a competitive swimmer, obsessed enough to make her parents drive her to practices at 5:30 a.m. She swam every weekday, spent her weekends at meets, but all of a sudden, at the end of a race in May 2003, her body went limp and she couldn’t get out of the pool.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Then she began having trouble moving elsewhere, too. Walking became hard. Sometimes she struggled to breathe. She stopped being able to digest, vomiting up almost everything she ate. She began to shed weight that she couldn’t afford to lose.\u003c/p>\n\u003cp>Her parents brought her to neurologists and psychiatrists and specialists of the gut, bouncing from practice to practice, from Massachusetts all the way to Maryland. They kept telling Zaia the same thing again and again: “They’d say, ‘Oh, it’s all in your head,” she said.\u003c/p>\n\u003cp>At first, Zaia and her parents went along with the idea. They probed her past for possible instances of trauma, but could find nothing besides garden-variety middle-school meanness from other kids, which hadn’t gone on for very long anyway. And the suggestions of depression and anorexia didn’t seem to add up with her mounting difficulty to move. “‘You’re trying not to walk because you hate to swim.’ That’s what they said,” Zaia recalled. “They were just like, ‘It’s a conversion disorder: You’re converting your not wanting to do this into physical symptoms.’”\u003c/p>\n\u003cp>No matter what she said, she couldn’t convince them that she wanted nothing more than to be able to swim again. Nor could she convince them, when they claimed her muscle spasms were an embodiment of her jealousy toward her siblings, that she did not feel jealous.\u003c/p>\n\u003cp>Her medical file began to take on an authority of its own, as if the hypothesis that her illness was psychological had, through repetition, become a fact. Doctors couldn’t unearth some underlying cause for the muscle tightness, and could find no relation to the mutiny in her gut. But there, in the pages of her record, was an explanation capable of tying these disparate threads together. The symptoms didn’t make sense, they thought, because she was, in some subconscious stratum, making them up.\u003c/p>\n\u003cp>It was only after years, in 2006, that Zaia got a diagnosis of primary dystonia — a condition characterized by involuntary muscle contractions — and learned just how common this kind of accusation is. “I’ve met lots of patients who spend five years being misdiagnosed,” said Pamela Sloate, a patient activist and board member of the Dystonia Medical Research Foundation. “They don’t have the skills to diagnose dystonia, so they tell the patient it’s imagined, or that it’s caused by depression.”\u003c/p>\n\u003cp>That can have a profound effect. As Zaia put it, “When somebody tells you that enough times, you start to believe it.”\u003c/p>\n\u003cp>Self-blame is something that Flaherty is familiar with. She felt it acutely in 1998, when her twin boys died immediately after birth. They were premature, so tiny their hands could hardly fit around her finger. To bury their ashes, she secretly took a folding shovel into Mount Auburn Cemetery to look for a spot where no one would see her digging. She chose a patch of shrubbery beside a pond grown green with duckweed: It reminded her of the scummy pool back home.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Ten days after their death, her sadness morphed into an overwhelming desire to write. She wrote on everything: paper, napkins, computers, her own skin. She’d written plenty before — waking up early to write a neurology handbook while she was a resident — but now it was uncontrollable, and the style had changed. “Looking at this stuff, I’m like, ‘Oh my, God, this is like teen diary garbage,’” she said.\u003c/p>\n\u003cp>She bounced between mania and depression, becoming obsessed with the idea that she’d been a bad mother, that it was all her fault. She knew, on the one hand, that she was sick — she’d been newly diagnosed with bipolar disorder, and was taking a pharmacopeia of pills — but also felt that her illness wasn’t real, that she was just fishing for attention.\u003c/p>\n\u003cp>“The most painful part of it was I thought I was making it up,” she said. “I thought I was this total loser that was making up something that had me in the hospital for nine days.”\u003c/p>\n\u003cp>Sometimes, she couldn’t physically lift her hand to her mouth to take her meds. She’d rock her arm back and forth, coaxing herself, like a volleyball player preparing to make a serve.\u003c/p>\n\u003cp>She was consumed by the doublethink of depression. She knew her symptoms weren’t fictional, but what if they were all in her head? She knew her obstetrician didn’t hate her, but what if he did? She wanted him to say that something terrible had happened. She wanted him to echo her own distress. She wanted him to cry.\u003c/p>\n\u003cp>Flaherty suspected the episode would end her medical career. Her colleagues told her not to tell anyone, but she was manic, and told everyone. She wrote about her illness in her book “The Midnight Disease,” and her story wound up in the glossy pages of magazines. Patients could idly flip through her postpartum mania while waiting for their appointments.\u003c/p>\n\u003cp>“The people who are most afraid of mental illness are doctors,” Flaherty said. “It turned out my patients were fine with it. … One guy said, ‘Yeah, that manic depressive thing you have, my internist has that. … Every six months or so, they have to lock him up, because he runs down the middle of the street naked. But I stay with him because he’s a really good doctor when he’s not crazy.’”\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Even as her mood stabilizers did their job, the impressions she had during illness stayed vivid: her conviction that she’d created her own symptoms, her over-analysis of her obstetrician’s veneer.\u003c/p>\n\u003cp>“She knows from experience how imperious doctors can be. … When you’re really in a lot of pain, or not sleeping, or whatever, in an acute phase, you feel like a supplicant,” said journalist and author Pagan Kennedy. The two had met in a local writers’ group, and when Kennedy experienced a mysterious bout of insomnia and acute pain, Flaherty counseled her not to rush into surgery, and checked in with her every day, listening. Kennedy is now making a podcast about Flaherty’s treatment of Styron.\u003c/p>\n\u003cp>The same skills that cement a friendship, Flaherty has found, are useful clinical tools. But bedside manner hasn’t come naturally to her. “I didn’t have any body language,” she said. “I was brought up in this WASP community with 500 guns in the basement. … We communicated by raising our eyebrows one teeny little tiny bit.”\u003c/p>\n\u003cp>So she sometimes glances at a mirror hidden in among the drawings and plants of her office, checking her own features, making sure she echoes the patient’s devastation or anger or joy. Above all — whether the symptoms are psychological, physical, or some combination of the two — she wants them to feel heard. By now, after years of practice, she says that most of the emotions behind her gestures are real.\u003c/p>\n\u003cp>When Flaherty finally met her, in the fall of 2012, Zaia had been sick for almost 10 years. She needed a wheelchair, and her muscles were so tight she was not able to sit up. Every so often, she’d get dystonic storms: Her back would arch so she couldn’t breathe, her neck yanked backwards, her arms pinned behind her, her legs pulled as far as they would go. “I would turn into a literal pretzel,” she said.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>The relationship began as pure coincidence. Zaia was an inpatient at Mass. General, home sick from the University of Illinois, Urbana-Champaign, and Flaherty happened to be the neurologist on duty. It wasn’t just the medical crisis that was worrying Zaia’s parents. Her primary neurologist, who had been treating Zaia’s dystonia for years, had put a letter in the medical record that signaled a change of tune.\u003c/p>\n\u003cp>“She was basically saying she had never believed Steph in the first place,” said her mother, Diane. “She basically treated Stephanie for dystonia for … years, and then said she did not have dystonia, and said that she was a wacko.”\u003c/p>\n\u003cp>And so Flaherty agreed to be Zaia’s neurologist. Already, to the family, that was a minor miracle. “No one wanted to touch me,” said Zaia.\u003c/p>\n\u003cp>During those years, Zaia had thought she might end up bed-bound in a nursing home. Now, she’s up every morning at 5:15 to catch the 7:16 train from Dedham into South Station. Her work, at Easter Seals Massachusetts, a nonprofit that provides disability services, is only a block away. She also helps run her own organization, PATH-WAY, which puts together social gatherings accessible to everyone and anyone, no matter their physical ability. To find members, she went to support groups for illnesses she didn’t have. At the end of the day, she catches the 4:43 back to Dedham.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>This\u003ca href=\"https://www.statnews.com/2018/06/19/alice-flaherty-mass-general-neurologist/\" target=\"_blank\" rel=\"noopener\"> story\u003c/a> was originally published by \u003ca href=\"https://www.statnews.com/2018/06/19/alice-flaherty-mass-general-neurologist/\" target=\"_blank\" rel=\"noopener\">STAT\u003c/a>, an online publication of Boston Globe Media that covers health, medicine, and scientific discovery.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/443021/its-not-all-in-your-head-when-other-doctors-give-up-on-patients-a-boundary-breaking-neurologist-treats-them","authors":["byline_futureofyou_443021"],"categories":["futureofyou_1"],"tags":["futureofyou_1561","futureofyou_56","futureofyou_173","futureofyou_204","futureofyou_59","futureofyou_1560"],"featImg":"futureofyou_443023","label":"source_futureofyou_443021"},"futureofyou_440955":{"type":"posts","id":"futureofyou_440955","meta":{"index":"posts_1591205157","site":"futureofyou","id":"440955","score":null,"sort":[1524524430000]},"guestAuthors":[],"slug":"the-vaccine-dilemma-how-experts-weigh-benefits-for-many-against-risks-for-a-few","title":"The Vaccine Dilemma: How Experts Weigh Benefits For Many Against Risks for a Few","publishDate":1524524430,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{},"content":"\u003cp>You’ve likely seen a version of the image above. Some people observe two faces in profile. Others see a vase.\u003c/p>\n\u003cp>The same phenomenon can occur when scientists look at data, particularly when they try to weigh the benefits and risks of individual vaccines. Vaccines protect huge numbers of people, generally children, from serious diseases, but in rare cases, certain vaccines can tragically cause harm. How do those scientists figure out which to value more?[contextly_sidebar id=\"vM6M1R2zIUt7PSfniSijCNeI1SXmNMTL\"]\u003c/p>\n\u003cp>This dilemma was at the center of last week’s decision by an expert committee advising the World Health Organization to sharply scale back use of a controversial vaccine called Dengvaxia, the first to protect against dengue infection.\u003c/p>\n\u003cp>Two years ago, many of the same experts concluded the vaccine was safe to use in children 9 and older in places where dengue infection is almost unavoidable — even though there were strong theoretical concerns the vaccine might put some vaccinated kids at higher risk of developing a severe form of dengue. Severe dengue can lead to internal bleeding, shock, and even death.\u003c/p>\n\u003cp>Late last year, theory was shown to be reality. After reviewing the data, the WHO’s Strategic Advisory Group of Experts on Immunizations — knows as the SAGE — shifted its stance, recommending last week that the vaccine be given only to children who test positive for a previous dengue infection. A point-of-care blood test doesn’t currently exist, leaving the vaccine’s future in limbo for now.[contextly_sidebar id=\"j6YzLYuARPhSnQ2nKylAVpIU8wdsgIj2\"]\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Benefits trumped theoretical risks. But real risks trumped real benefits — even though the latter outnumbered the former.\u003c/p>\n\u003cp>A variety of factors influence these decisions, according to interviews with public health experts and ethicists who have made or studied them. The severity of disease being prevented and the treatability of the side effects being caused are crucial, as are ethics, public perceptions, and politics. And critically, these days, so is the likelihood that any negative attention generated by one vaccine might stain the reputations of others.\u003c/p>\n\u003cp>Dr. Art Reingold has been involved in countless debates of this type, having served for more than a dozen years on first the SAGE, and later on the corresponding body that advises the Centers for Disease Control and Prevention, the Advisory Committee on Immunization Practices, or ACIP.[contextly_sidebar id=\"xdscPdRSoRoclTtqbEFBgO7cpt3QJHtx\"]\u003c/p>\n\u003cp>“I would say that for many individuals having to vote or being on these committees and weigh in, many of them spend an awful lot of time looking at data and reviewing it and struggling with it when it’s not a slam dunk,” said Reingold, who teaches infectious diseases epidemiology at the University of California, Berkeley’s school of public health.\u003c/p>\n\u003cp>Reingold, whose term on ACIP concluded at the end of last year, noted that while many of that panel’s votes are close to unanimous, some recommendations — or decisions not to recommend a vaccine — are decided by a narrow vote. “And obviously in that instance pretty smart people have come down on different sides of the same question by weighing effectively all the same evidence,’’ he said.\u003c/p>\n\u003cp>\u003cstrong>The Vaccine Calculus\u003cbr>\n\u003c/strong>In some cases, these decisions aren’t that difficult. A flu shot can trigger Guillain-Barre syndrome, though this adverse event is very rare. But influenza infection can also provoke this disorder, a form of progressive paralysis from which most people recover.\u003c/p>\n\u003cp>In other circumstances, the position of the scales — which side is higher, which is lower — tilts over time.\u003c/p>\n\u003cp>Oral polio vaccine has saved untold millions of children from paralysis in the more than half-century it has been in use. But in rare instances the vaccine also paralyzes, a fact that became clear in the first year of its use, back in the early 1960s.\u003c/p>\n\u003cp>Sometimes the paralysis occurs in the child who got the dose of vaccine, or in a close contact of that child, as was reported in 1962. Other times the weakened viruses in the vaccine circulate among unvaccinated children, who ingest them in water or food contaminated with traces of feces. As the viruses travel from gut to gut, they can go rogue — regain the power to paralyze. That phenomenon was first observed in 2000. Yet oral polio vaccine is still used today.\u003c/p>\n\u003cp>[contextly_sidebar id=\"4xoAKYJE6AnYbA5mfYOPli4oSCgYa7Q4\"]As polio eradication efforts have driven down the polio case count to very low levels, the toll of vaccine-related paralysis can surpass the damage caused by the viruses themselves. Last year there were 22 children in the world paralyzed by polioviruses; vaccine viruses crippled 96.\u003c/p>\n\u003cp>The shifting of the risk-benefit ratio for oral polio vaccine led the United States to switch exclusively to injectable polio vaccine in 2000. In 1996, when the decision to phase out oral vaccine was made, eight or nine children a year were being paralyzed by the vaccine, though polio itself hadn’t paralyzed a child in the United States for over a decade.\u003c/p>\n\u003cp>The risk posed by the oral vaccine became intolerable, given there was a safer, albeit more expensive alternative — the injectable polio vaccine does not paralyze. “Obviously thinking on these things can change. The risks and benefits relatively speaking can change,” Reingold said.\u003c/p>\n\u003cp>In 2016, the formulation of the oral vaccines was altered to drop the component that protected against type 2 polioviruses. That part of the vaccine was the most likely to regain the power to paralyze. Type 2 viruses had disappeared in 1999; there was too little benefit and too much risk associated with keeping them in the vaccine.\u003c/p>\n\u003cp>In the case of Dengvaxia, the calculus is not as clear cut. Evidence suggests that in places where about 70 percent of people have been infected at least once with dengue, the vaccine would prevent seven children from getting sick enough to need hospital care for every additional hospitalized case it provoked. In places where 85 percent of people have been infected, there would be 18 hospitalized cases prevented for every one the vaccine created.\u003c/p>\n\u003cp>Some dengue experts have argued those benefits should not be ignored. Others argue those risks cannot ethically be incurred.\u003c/p>\n\u003cp>[contextly_sidebar id=\"YfGTYns6XDY9Onrzu1EUV5DkCwM08fCc\"]The SAGE deliberated over whether it was permissible to use rates of local dengue infection as a substitute for individual testing — in other words, could the vaccine be given, as it had previously recommended, in places where studies show most people have been infected at least once?\u003c/p>\n\u003cp>They concluded both options pose real-world challenges, given the current lack of a rapid, accurate test. But they also noted there is no evidence to date that children who have never been infected with dengue — the ones the vaccine could harm — would ever experience a benefit from Dengvaxia. They worried that wide-scale dengue vaccination programs might be “ethically problematic and have adverse implications for trust and the long-term success of public health programs.”\u003c/p>\n\u003cp>\u003cstrong>Mounting Distrust\u003cbr>\n\u003c/strong>Why have oral polio vaccine risks been tolerated, but Dengvaxia’s deemed serious enough to effectively shelve the vaccine? Here the factors named above plus timing surely play a role.\u003c/p>\n\u003cp>Experts making these types of decisions these days are doing so in a climate of litigiousness and mounting vaccine refusal and hesitancy. Headlines questioning the safety of one vaccine threaten to fuel rejection of others. The government of the Philippines, where Dengvaxia has been given to more than 800,000 children, has threatened legal action against its manufacturer, Sanofi Pasteur.\u003c/p>\n\u003cp>“The public has a whole new understanding of science, data, facts, and fake news,” said Michael Osterholm, director of the University of Minnesota’s Center for Infectious Diseases Research and Policy. “We’ve surely had an anti-science movement well before the current situation, but it’s never been as acute.”[contextly_sidebar id=\"MRQx4tKZn53WSvNmnqGKkUDbBGs0RMX9\"]\u003c/p>\n\u003cp>Then there’s the issue of who gets vaccinated. Most of these products are designed to protect children, who hold a special position in discussions of the ethics of medical treatments.\u003c/p>\n\u003cp>The ethical bar must be placed higher when it comes to kids, because they cannot make an informed decision for themselves, said Art Caplan, a professor of bioethics at New York University’s school of medicine. “So I think the issue is not just: Could we accept huge benefits for small risks? Because I think the answer to that is yes. But I think it’s: Can we accept huge benefits for small risks to very vulnerable children?\u003c/p>\n\u003cp>“When you have that child population put knowingly at risk, it gets really hard from the ethics point of view to ignore that,” he said.\u003c/p>\n\u003cp>And society’s tolerance of risk has changed, Caplan argued, pointing to the so-called Cutter incident to make his case.\u003c/p>\n\u003cp>In 1955, it was discovered that children had been mistakenly injected with polio vaccine that contained live viruses. The process by which the viruses in the vaccine were supposed to be inactivated — killed — hadn’t worked. Fifty-one children in the U.S. were paralyzed and five died.\u003c/p>\n\u003cp>But in the 1950s, polio was an enormous threat. Parents lived in fear their children would end up in an iron lung. Polio vaccination resumed. The company that made the vaccine, Cutter Laboratories, didn’t even go out of business. If a similar incident were to happen today, Caplan said, “it would have shut everything down forever.”[contextly_sidebar id=\"TB4CDGkuuXqcHsBv1pEbtZgMooHhybmV\"]\u003c/p>\n\u003cp>Compare that to the case of RotaShield, the first vaccine licensed to protect against rotavirus infection. These common viruses cause devastating bouts of diarrhea in young children, who can end up in the hospital as a result. Every year some children died of these infections in the U.S., but rotaviruses did more damage in the developing world, where stricken kids didn’t have easy access to hospital care.\u003c/p>\n\u003cp>RotaShield was approved in the U.S. in 1998. A year later, Wyeth Laboratories withdrew it from the market after studies showed babies who got it were at greater risk of developing intussusception, a type of bowel blockage that can kill if it isn’t corrected in time. The CDC estimated that for every 10,000 children vaccinated with RotaShield there would be one or two additional cases of intussusception over what is normally seen.\u003c/p>\n\u003cp>Some experts argued that the vaccine should still be marketed in the developing world, where the number of lives saved would far outstrip the cases of intussusception. The WHO estimated that in 2004, more than half a million children died from rotavirus infections, the lion’s share in South Asia and sub-Saharan Africa.\u003c/p>\n\u003cp>“When you think about the risk-benefit equation in a poor country, almost certainly it would have been far better in terms of illness — preventable deaths averted, cost of care reduced — to continue to use that initial rotavirus vaccine or rather to introduce it and use it in poor countries,” Reingold said.\u003c/p>\n\u003cp>But the vaccine’s fate was sealed.\u003c/p>\n\u003cp>“The fact is that the politics around the thing — this vaccine isn’t good enough for rich white children in the United States but it’s OK for poor black children in poor countries — were a non-starter,” he said. “I mean, it just doesn’t sell. Even if that’s still the wisest thing to do.”\u003c/p>\n\u003cp>It was nearly six years before another, safer rotavirus vaccine made it to market, six years during which more than half a million children a year died from rotavirus infections.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>This \u003ca href=\"https://www.statnews.com/2018/04/23/vaccine-dilemma-weigh-benefits-risks/\" target=\"_blank\" rel=\"noopener\">story\u003c/a> was originally published by STAT, an online publication of Boston Globe Media that covers health, medicine, and scientific discovery.\u003c/em>\u003c/p>\n\n","blocks":[],"excerpt":"Headlines questioning the safety of one vaccine threaten to fuel rejection of others. ","status":"publish","parent":0,"modified":1524516855,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":41,"wordCount":1990},"headData":{"title":"The Vaccine Dilemma: How Experts Weigh Benefits For Many Against Risks for a Few | KQED","description":"Headlines questioning the safety of one vaccine threaten to fuel rejection of others. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"The Vaccine Dilemma: How Experts Weigh Benefits For Many Against Risks for a Few","datePublished":"2018-04-23T23:00:30.000Z","dateModified":"2018-04-23T20:54:15.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"440955 https://ww2.kqed.org/futureofyou/?p=440955","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/04/23/the-vaccine-dilemma-how-experts-weigh-benefits-for-many-against-risks-for-a-few/","disqusTitle":"The Vaccine Dilemma: How Experts Weigh Benefits For Many Against Risks for a Few","source":"Health","nprByline":"Helen Branswell\u003c/BR>\u003cstrong>STAT\u003c/strong>","path":"/futureofyou/440955/the-vaccine-dilemma-how-experts-weigh-benefits-for-many-against-risks-for-a-few","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>You’ve likely seen a version of the image above. Some people observe two faces in profile. Others see a vase.\u003c/p>\n\u003cp>The same phenomenon can occur when scientists look at data, particularly when they try to weigh the benefits and risks of individual vaccines. Vaccines protect huge numbers of people, generally children, from serious diseases, but in rare cases, certain vaccines can tragically cause harm. How do those scientists figure out which to value more?\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>This dilemma was at the center of last week’s decision by an expert committee advising the World Health Organization to sharply scale back use of a controversial vaccine called Dengvaxia, the first to protect against dengue infection.\u003c/p>\n\u003cp>Two years ago, many of the same experts concluded the vaccine was safe to use in children 9 and older in places where dengue infection is almost unavoidable — even though there were strong theoretical concerns the vaccine might put some vaccinated kids at higher risk of developing a severe form of dengue. Severe dengue can lead to internal bleeding, shock, and even death.\u003c/p>\n\u003cp>Late last year, theory was shown to be reality. After reviewing the data, the WHO’s Strategic Advisory Group of Experts on Immunizations — knows as the SAGE — shifted its stance, recommending last week that the vaccine be given only to children who test positive for a previous dengue infection. A point-of-care blood test doesn’t currently exist, leaving the vaccine’s future in limbo for now.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Benefits trumped theoretical risks. But real risks trumped real benefits — even though the latter outnumbered the former.\u003c/p>\n\u003cp>A variety of factors influence these decisions, according to interviews with public health experts and ethicists who have made or studied them. The severity of disease being prevented and the treatability of the side effects being caused are crucial, as are ethics, public perceptions, and politics. And critically, these days, so is the likelihood that any negative attention generated by one vaccine might stain the reputations of others.\u003c/p>\n\u003cp>Dr. Art Reingold has been involved in countless debates of this type, having served for more than a dozen years on first the SAGE, and later on the corresponding body that advises the Centers for Disease Control and Prevention, the Advisory Committee on Immunization Practices, or ACIP.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>“I would say that for many individuals having to vote or being on these committees and weigh in, many of them spend an awful lot of time looking at data and reviewing it and struggling with it when it’s not a slam dunk,” said Reingold, who teaches infectious diseases epidemiology at the University of California, Berkeley’s school of public health.\u003c/p>\n\u003cp>Reingold, whose term on ACIP concluded at the end of last year, noted that while many of that panel’s votes are close to unanimous, some recommendations — or decisions not to recommend a vaccine — are decided by a narrow vote. “And obviously in that instance pretty smart people have come down on different sides of the same question by weighing effectively all the same evidence,’’ he said.\u003c/p>\n\u003cp>\u003cstrong>The Vaccine Calculus\u003cbr>\n\u003c/strong>In some cases, these decisions aren’t that difficult. A flu shot can trigger Guillain-Barre syndrome, though this adverse event is very rare. But influenza infection can also provoke this disorder, a form of progressive paralysis from which most people recover.\u003c/p>\n\u003cp>In other circumstances, the position of the scales — which side is higher, which is lower — tilts over time.\u003c/p>\n\u003cp>Oral polio vaccine has saved untold millions of children from paralysis in the more than half-century it has been in use. But in rare instances the vaccine also paralyzes, a fact that became clear in the first year of its use, back in the early 1960s.\u003c/p>\n\u003cp>Sometimes the paralysis occurs in the child who got the dose of vaccine, or in a close contact of that child, as was reported in 1962. Other times the weakened viruses in the vaccine circulate among unvaccinated children, who ingest them in water or food contaminated with traces of feces. As the viruses travel from gut to gut, they can go rogue — regain the power to paralyze. That phenomenon was first observed in 2000. Yet oral polio vaccine is still used today.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>As polio eradication efforts have driven down the polio case count to very low levels, the toll of vaccine-related paralysis can surpass the damage caused by the viruses themselves. Last year there were 22 children in the world paralyzed by polioviruses; vaccine viruses crippled 96.\u003c/p>\n\u003cp>The shifting of the risk-benefit ratio for oral polio vaccine led the United States to switch exclusively to injectable polio vaccine in 2000. In 1996, when the decision to phase out oral vaccine was made, eight or nine children a year were being paralyzed by the vaccine, though polio itself hadn’t paralyzed a child in the United States for over a decade.\u003c/p>\n\u003cp>The risk posed by the oral vaccine became intolerable, given there was a safer, albeit more expensive alternative — the injectable polio vaccine does not paralyze. “Obviously thinking on these things can change. The risks and benefits relatively speaking can change,” Reingold said.\u003c/p>\n\u003cp>In 2016, the formulation of the oral vaccines was altered to drop the component that protected against type 2 polioviruses. That part of the vaccine was the most likely to regain the power to paralyze. Type 2 viruses had disappeared in 1999; there was too little benefit and too much risk associated with keeping them in the vaccine.\u003c/p>\n\u003cp>In the case of Dengvaxia, the calculus is not as clear cut. Evidence suggests that in places where about 70 percent of people have been infected at least once with dengue, the vaccine would prevent seven children from getting sick enough to need hospital care for every additional hospitalized case it provoked. In places where 85 percent of people have been infected, there would be 18 hospitalized cases prevented for every one the vaccine created.\u003c/p>\n\u003cp>Some dengue experts have argued those benefits should not be ignored. Others argue those risks cannot ethically be incurred.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>The SAGE deliberated over whether it was permissible to use rates of local dengue infection as a substitute for individual testing — in other words, could the vaccine be given, as it had previously recommended, in places where studies show most people have been infected at least once?\u003c/p>\n\u003cp>They concluded both options pose real-world challenges, given the current lack of a rapid, accurate test. But they also noted there is no evidence to date that children who have never been infected with dengue — the ones the vaccine could harm — would ever experience a benefit from Dengvaxia. They worried that wide-scale dengue vaccination programs might be “ethically problematic and have adverse implications for trust and the long-term success of public health programs.”\u003c/p>\n\u003cp>\u003cstrong>Mounting Distrust\u003cbr>\n\u003c/strong>Why have oral polio vaccine risks been tolerated, but Dengvaxia’s deemed serious enough to effectively shelve the vaccine? Here the factors named above plus timing surely play a role.\u003c/p>\n\u003cp>Experts making these types of decisions these days are doing so in a climate of litigiousness and mounting vaccine refusal and hesitancy. Headlines questioning the safety of one vaccine threaten to fuel rejection of others. The government of the Philippines, where Dengvaxia has been given to more than 800,000 children, has threatened legal action against its manufacturer, Sanofi Pasteur.\u003c/p>\n\u003cp>“The public has a whole new understanding of science, data, facts, and fake news,” said Michael Osterholm, director of the University of Minnesota’s Center for Infectious Diseases Research and Policy. “We’ve surely had an anti-science movement well before the current situation, but it’s never been as acute.”\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Then there’s the issue of who gets vaccinated. Most of these products are designed to protect children, who hold a special position in discussions of the ethics of medical treatments.\u003c/p>\n\u003cp>The ethical bar must be placed higher when it comes to kids, because they cannot make an informed decision for themselves, said Art Caplan, a professor of bioethics at New York University’s school of medicine. “So I think the issue is not just: Could we accept huge benefits for small risks? Because I think the answer to that is yes. But I think it’s: Can we accept huge benefits for small risks to very vulnerable children?\u003c/p>\n\u003cp>“When you have that child population put knowingly at risk, it gets really hard from the ethics point of view to ignore that,” he said.\u003c/p>\n\u003cp>And society’s tolerance of risk has changed, Caplan argued, pointing to the so-called Cutter incident to make his case.\u003c/p>\n\u003cp>In 1955, it was discovered that children had been mistakenly injected with polio vaccine that contained live viruses. The process by which the viruses in the vaccine were supposed to be inactivated — killed — hadn’t worked. Fifty-one children in the U.S. were paralyzed and five died.\u003c/p>\n\u003cp>But in the 1950s, polio was an enormous threat. Parents lived in fear their children would end up in an iron lung. Polio vaccination resumed. The company that made the vaccine, Cutter Laboratories, didn’t even go out of business. If a similar incident were to happen today, Caplan said, “it would have shut everything down forever.”\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Compare that to the case of RotaShield, the first vaccine licensed to protect against rotavirus infection. These common viruses cause devastating bouts of diarrhea in young children, who can end up in the hospital as a result. Every year some children died of these infections in the U.S., but rotaviruses did more damage in the developing world, where stricken kids didn’t have easy access to hospital care.\u003c/p>\n\u003cp>RotaShield was approved in the U.S. in 1998. A year later, Wyeth Laboratories withdrew it from the market after studies showed babies who got it were at greater risk of developing intussusception, a type of bowel blockage that can kill if it isn’t corrected in time. The CDC estimated that for every 10,000 children vaccinated with RotaShield there would be one or two additional cases of intussusception over what is normally seen.\u003c/p>\n\u003cp>Some experts argued that the vaccine should still be marketed in the developing world, where the number of lives saved would far outstrip the cases of intussusception. The WHO estimated that in 2004, more than half a million children died from rotavirus infections, the lion’s share in South Asia and sub-Saharan Africa.\u003c/p>\n\u003cp>“When you think about the risk-benefit equation in a poor country, almost certainly it would have been far better in terms of illness — preventable deaths averted, cost of care reduced — to continue to use that initial rotavirus vaccine or rather to introduce it and use it in poor countries,” Reingold said.\u003c/p>\n\u003cp>But the vaccine’s fate was sealed.\u003c/p>\n\u003cp>“The fact is that the politics around the thing — this vaccine isn’t good enough for rich white children in the United States but it’s OK for poor black children in poor countries — were a non-starter,” he said. “I mean, it just doesn’t sell. Even if that’s still the wisest thing to do.”\u003c/p>\n\u003cp>It was nearly six years before another, safer rotavirus vaccine made it to market, six years during which more than half a million children a year died from rotavirus infections.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>This \u003ca href=\"https://www.statnews.com/2018/04/23/vaccine-dilemma-weigh-benefits-risks/\" target=\"_blank\" rel=\"noopener\">story\u003c/a> was originally published by STAT, an online publication of Boston Globe Media that covers health, medicine, and scientific discovery.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/440955/the-vaccine-dilemma-how-experts-weigh-benefits-for-many-against-risks-for-a-few","authors":["byline_futureofyou_440955"],"categories":["futureofyou_1","futureofyou_73"],"tags":["futureofyou_141","futureofyou_952","futureofyou_662","futureofyou_61","futureofyou_173","futureofyou_1488","futureofyou_652"],"featImg":"futureofyou_440964","label":"source_futureofyou_440955"},"futureofyou_440580":{"type":"posts","id":"futureofyou_440580","meta":{"index":"posts_1591205157","site":"futureofyou","id":"440580","score":null,"sort":[1522346838000]},"guestAuthors":[],"slug":"how-bad-medicine-dismisses-and-misdiagnoses-womens-symptoms","title":"How 'Bad Medicine' Dismisses And Misdiagnoses Women's Symptoms","publishDate":1522346838,"format":"audio","headTitle":"Women’s Health | Future of You | KQED Future of You | KQED Science","labelTerm":{},"content":"\u003cp>[audio mp3=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2018/03/20180327_fa_01.mp3\" autoplay=\"true\"][/audio]\u003c/p>\n\u003cp>When journalist Maya Dusenbery was in her 20s, she started experiencing progressive pain in her joints, which she learned was caused by \u003ca href=\"https://www.npr.org/tags/164632370/rheumatoid-arthritis\" target=\"_blank\" rel=\"noopener\">rheumatoid arthritis.\u003c/a>\u003c/p>\n\u003cp>As she began to research her own condition, Dusenbery realized how lucky she was to have been diagnosed relatively easily. Other women with similar symptoms, she says, \"experienced very long diagnostic delays and felt ... that their symptoms were not taken seriously.\"\u003c/p>\n\u003cp>Dusenbery says these experiences fit into a larger pattern of gender bias in medicine. Her new book, \u003cem>Doing Harm,\u003c/em> makes the case that women's symptoms are often dismissed and misdiagnosed — in part because of what she calls the \"systemic and unconscious bias that's rooted ... in what doctors, regardless of their own gender, are learning in medical schools.\"\u003c/p>\n\u003cp>\"I definitely believe that the fact that medicine has been historically and continues to be mainly run by men has been a source of these problems,\" she says. \"The medical knowledge that we have is just skewed towards knowing more about men's bodies and the conditions that disproportionately affect them.\"\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Dusenbery is also the executive editor of \u003ca href=\"http://feministing.com/\" target=\"_blank\" rel=\"noopener\">Feministing\u003c/a>, a website of writing by young feminists about social, cultural and political issues.\u003c/p>\n\u003ch3 class=\"edTag\">\u003cstrong>Interview Highlights\u003c/strong>\u003c/h3>\n\u003cp>\u003cstrong>On how women have been left out of drug trials and medical observational studies\u003c/strong>\u003c/p>\n\u003cp>There was a lot of concern about including women in drug trials, specifically because of concerns about affecting their hypothetical fetuses. So in the '70s the FDA had a policy of prohibiting any woman of childbearing age from participating in early-stage drug trials.\u003c/p>\n\u003cp>But we also see that at that time, women were also excluded from studies that were just observational studies — not just drug trials. In the '90s, when there were congressional hearings about this problem, the public learned that women had been left out of things like a big observational study looking at normal human aging that was ongoing for 20 years. It started in the '50s, and for the first 20 years women had been left out of that.\u003c/p>\n\u003cp>\u003cstrong>On women's recent inclusion in National Institutes of Health studies \u003c/strong>\u003c/p>\n\u003cp>[In] 1993, Congress passed a law saying that women need to be included in NIH-funded clinical research. And in the aggregate, women do make up a majority of subjects in NIH research. However, we still don't know that women are necessarily adequately represented in all areas of research, because the NIH looks at the aggregate numbers, and the outside analyses that have been done show that women are still a little bit underrepresented.\u003c/p>\n\u003cp>More importantly, even though women are usually included in most studies today, it's still not the norm to really analyze results by gender to actually see if there are differences between men and women. So experts have described this to me as an \"add women and stir\" approach. Women are included, but we're still not getting the knowledge we need about ways that their symptoms or responses to treatment might differ from men.\u003c/p>\n\u003cp>\u003cstrong>On why some medicine affects men and women differently — and how that results in women receiving excessive doses of most drugs\u003c/strong>\u003c/p>\n\u003cp>There are a lot of factors that go into these recognized sex differences in drug metabolism and response. ... Percentage of body fat affects it. Hormones, different levels of enzymes — all of these things go into it. But really, probably the most straightforward [factor] is that, on average, men have a higher body weight than women. And yet, even that difference is not usually accounted for. We prescribe drugs based on this one-size-fits-all dosage, but that ends up meaning that, on average, women are being overdosed on most drugs.\u003c/p>\n\u003cp>\u003cstrong>On the difference between how men and women experience heart disease \u003c/strong>\u003c/p>\n\u003cp>Over the last couple of decades, there's been a recognition that for the first 35 years we were studying heart disease, we were really mostly studying it in men. And so there's been a concerted effort to go back and compare women's experiences to men's, which has led to the knowledge that women are more likely to have what are considered to be atypical symptoms. [And] the only reason they're considered \"atypical\" is because the norm has been this male model — so, atypical symptoms, like pain in the neck or shoulder, nausea, fatigue, lightheadedness. ...\u003c/p>\n\u003cp>Partly as a result of those differences in symptoms — which are still not always recognized by health care providers — women (especially younger women) are more likely to be turned away when they're having a heart attack, sent home. One study found it was younger women — so women under 55 — were seven times more likely than the average patient to be sent home mid-heart attack. ... Even if they're not sent home, you see longer delays [for women] to getting [electrocardiograms] and other diagnostic testing or interventions in the ER setting.\u003c/p>\n\u003cp>\u003cstrong>On how the subjective symptom of fatigue is dismissed in women\u003c/strong>\u003c/p>\n\u003cp>One of the most common [symptoms] that really is common across ... [the autoimmune diseases] is fatigue — a really deep, deep fatigue that isn't just being sleep-deprived from staying up too late. That fatigue, comparable to pain, is this very subjective symptom that's hard to communicate to other people. And I think that women are up against this real distrust of their own reports of their symptoms.\u003c/p>\n\u003cp>So conditions like autoimmune diseases that really are marked by these subjective symptoms of pain and fatigue, I think, are very easy to dismiss in women. ... Even though we do know about autoimmune diseases, during that diagnostic delay, women are often told, \"You're just stressed. You're tired.\" And [they] have a really hard time convincing doctors that this fatigue is abnormal.\u003c/p>\n\u003cp>\u003cstrong>On some female patients taking a male relative or spouse with them to doctors' appointments to vouch for them\u003c/strong>\u003c/p>\n\u003cp>I found this to be one of the most disturbing things that I found in my research: how many women reported that as they were fighting to get their symptoms taken seriously, [they] just sort of sensed that what they really needed was somebody to testify to their symptoms, to testify to their sanity, and felt that bringing a partner or a father or even a son would be helpful. And then [they] found that it was [helpful], that they were treated differently when there was that man in the room who was corroborating their reports.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>Heidi Saman and Seth Kelley produced and edited this interview for broadcast. Bridget Bentz, Molly Seavy-Nesper and Scott Hensley adapted it for the Web.\u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 Fresh Air. To see more, visit \u003ca href=\"http://www.npr.org/programs/fresh-air/\" target=\"_blank\" rel=\"noopener\">Fresh Air\u003c/a>.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=How+%27Bad+Medicine%27+Dismisses+And+Misdiagnoses+Women%27s+Symptoms&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n","blocks":[],"excerpt":"Journalist Maya Dusenbery argues that medicine has a gender bias rooted in medical school training.","status":"publish","parent":0,"modified":1522346881,"stats":{"hasAudio":true,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":24,"wordCount":1136},"headData":{"title":"How 'Bad Medicine' Dismisses And Misdiagnoses Women's Symptoms | KQED","description":"Journalist Maya Dusenbery argues that medicine has a gender bias rooted in medical school training.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"How 'Bad Medicine' Dismisses And Misdiagnoses Women's Symptoms","datePublished":"2018-03-29T18:07:18.000Z","dateModified":"2018-03-29T18:08:01.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"440580 https://ww2.kqed.org/futureofyou/?p=440580","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/03/29/how-bad-medicine-dismisses-and-misdiagnoses-womens-symptoms/","disqusTitle":"How 'Bad Medicine' Dismisses And Misdiagnoses Women's Symptoms","source":"Health","audioUrl":"https://ondemand.npr.org/anon.npr-mp3/npr/fa/2018/03/20180327_fa_01.mp3?orgId=427869011&topicId=1128&d=1159&p=13&story=597159133&siteplayer=true&dl=1","nprImageCredit":"PhotoAlto/Michele Constantini","nprByline":"Terry Gross, NPR","nprImageAgency":"Getty Images","nprStoryId":"597159133","nprApiLink":"http://api.npr.org/query?id=597159133&apiKey=MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004","nprHtmlLink":"https://www.npr.org/sections/health-shots/2018/03/27/597159133/how-bad-medicine-dismisses-and-misdiagnoses-womens-symptoms?ft=nprml&f=597159133","nprRetrievedStory":"1","nprPubDate":"Wed, 28 Mar 2018 18:09:00 -0400","nprStoryDate":"Tue, 27 Mar 2018 12:15:00 -0400","nprLastModifiedDate":"Wed, 28 Mar 2018 18:09:57 -0400","nprAudio":"https://ondemand.npr.org/anon.npr-mp3/npr/fa/2018/03/20180327_fa_01.mp3?orgId=427869011&topicId=1128&d=1159&p=13&story=597159133&ft=nprml&f=597159133","nprAudioM3u":"http://api.npr.org/m3u/1597344748-5b1788.m3u?orgId=427869011&topicId=1128&d=1159&p=13&story=597159133&ft=nprml&f=597159133","path":"/futureofyou/440580/how-bad-medicine-dismisses-and-misdiagnoses-womens-symptoms","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"audio","attributes":{"named":{"mp3":"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2018/03/20180327_fa_01.mp3","autoplay":"true","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>When journalist Maya Dusenbery was in her 20s, she started experiencing progressive pain in her joints, which she learned was caused by \u003ca href=\"https://www.npr.org/tags/164632370/rheumatoid-arthritis\" target=\"_blank\" rel=\"noopener\">rheumatoid arthritis.\u003c/a>\u003c/p>\n\u003cp>As she began to research her own condition, Dusenbery realized how lucky she was to have been diagnosed relatively easily. Other women with similar symptoms, she says, \"experienced very long diagnostic delays and felt ... that their symptoms were not taken seriously.\"\u003c/p>\n\u003cp>Dusenbery says these experiences fit into a larger pattern of gender bias in medicine. Her new book, \u003cem>Doing Harm,\u003c/em> makes the case that women's symptoms are often dismissed and misdiagnosed — in part because of what she calls the \"systemic and unconscious bias that's rooted ... in what doctors, regardless of their own gender, are learning in medical schools.\"\u003c/p>\n\u003cp>\"I definitely believe that the fact that medicine has been historically and continues to be mainly run by men has been a source of these problems,\" she says. \"The medical knowledge that we have is just skewed towards knowing more about men's bodies and the conditions that disproportionately affect them.\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Dusenbery is also the executive editor of \u003ca href=\"http://feministing.com/\" target=\"_blank\" rel=\"noopener\">Feministing\u003c/a>, a website of writing by young feminists about social, cultural and political issues.\u003c/p>\n\u003ch3 class=\"edTag\">\u003cstrong>Interview Highlights\u003c/strong>\u003c/h3>\n\u003cp>\u003cstrong>On how women have been left out of drug trials and medical observational studies\u003c/strong>\u003c/p>\n\u003cp>There was a lot of concern about including women in drug trials, specifically because of concerns about affecting their hypothetical fetuses. So in the '70s the FDA had a policy of prohibiting any woman of childbearing age from participating in early-stage drug trials.\u003c/p>\n\u003cp>But we also see that at that time, women were also excluded from studies that were just observational studies — not just drug trials. In the '90s, when there were congressional hearings about this problem, the public learned that women had been left out of things like a big observational study looking at normal human aging that was ongoing for 20 years. It started in the '50s, and for the first 20 years women had been left out of that.\u003c/p>\n\u003cp>\u003cstrong>On women's recent inclusion in National Institutes of Health studies \u003c/strong>\u003c/p>\n\u003cp>[In] 1993, Congress passed a law saying that women need to be included in NIH-funded clinical research. And in the aggregate, women do make up a majority of subjects in NIH research. However, we still don't know that women are necessarily adequately represented in all areas of research, because the NIH looks at the aggregate numbers, and the outside analyses that have been done show that women are still a little bit underrepresented.\u003c/p>\n\u003cp>More importantly, even though women are usually included in most studies today, it's still not the norm to really analyze results by gender to actually see if there are differences between men and women. So experts have described this to me as an \"add women and stir\" approach. Women are included, but we're still not getting the knowledge we need about ways that their symptoms or responses to treatment might differ from men.\u003c/p>\n\u003cp>\u003cstrong>On why some medicine affects men and women differently — and how that results in women receiving excessive doses of most drugs\u003c/strong>\u003c/p>\n\u003cp>There are a lot of factors that go into these recognized sex differences in drug metabolism and response. ... Percentage of body fat affects it. Hormones, different levels of enzymes — all of these things go into it. But really, probably the most straightforward [factor] is that, on average, men have a higher body weight than women. And yet, even that difference is not usually accounted for. We prescribe drugs based on this one-size-fits-all dosage, but that ends up meaning that, on average, women are being overdosed on most drugs.\u003c/p>\n\u003cp>\u003cstrong>On the difference between how men and women experience heart disease \u003c/strong>\u003c/p>\n\u003cp>Over the last couple of decades, there's been a recognition that for the first 35 years we were studying heart disease, we were really mostly studying it in men. And so there's been a concerted effort to go back and compare women's experiences to men's, which has led to the knowledge that women are more likely to have what are considered to be atypical symptoms. [And] the only reason they're considered \"atypical\" is because the norm has been this male model — so, atypical symptoms, like pain in the neck or shoulder, nausea, fatigue, lightheadedness. ...\u003c/p>\n\u003cp>Partly as a result of those differences in symptoms — which are still not always recognized by health care providers — women (especially younger women) are more likely to be turned away when they're having a heart attack, sent home. One study found it was younger women — so women under 55 — were seven times more likely than the average patient to be sent home mid-heart attack. ... Even if they're not sent home, you see longer delays [for women] to getting [electrocardiograms] and other diagnostic testing or interventions in the ER setting.\u003c/p>\n\u003cp>\u003cstrong>On how the subjective symptom of fatigue is dismissed in women\u003c/strong>\u003c/p>\n\u003cp>One of the most common [symptoms] that really is common across ... [the autoimmune diseases] is fatigue — a really deep, deep fatigue that isn't just being sleep-deprived from staying up too late. That fatigue, comparable to pain, is this very subjective symptom that's hard to communicate to other people. And I think that women are up against this real distrust of their own reports of their symptoms.\u003c/p>\n\u003cp>So conditions like autoimmune diseases that really are marked by these subjective symptoms of pain and fatigue, I think, are very easy to dismiss in women. ... Even though we do know about autoimmune diseases, during that diagnostic delay, women are often told, \"You're just stressed. You're tired.\" And [they] have a really hard time convincing doctors that this fatigue is abnormal.\u003c/p>\n\u003cp>\u003cstrong>On some female patients taking a male relative or spouse with them to doctors' appointments to vouch for them\u003c/strong>\u003c/p>\n\u003cp>I found this to be one of the most disturbing things that I found in my research: how many women reported that as they were fighting to get their symptoms taken seriously, [they] just sort of sensed that what they really needed was somebody to testify to their symptoms, to testify to their sanity, and felt that bringing a partner or a father or even a son would be helpful. And then [they] found that it was [helpful], that they were treated differently when there was that man in the room who was corroborating their reports.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>Heidi Saman and Seth Kelley produced and edited this interview for broadcast. Bridget Bentz, Molly Seavy-Nesper and Scott Hensley adapted it for the Web.\u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 Fresh Air. To see more, visit \u003ca href=\"http://www.npr.org/programs/fresh-air/\" target=\"_blank\" rel=\"noopener\">Fresh Air\u003c/a>.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=How+%27Bad+Medicine%27+Dismisses+And+Misdiagnoses+Women%27s+Symptoms&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/440580/how-bad-medicine-dismisses-and-misdiagnoses-womens-symptoms","authors":["byline_futureofyou_440580"],"programs":["futureofyou_54"],"series":["futureofyou_219"],"categories":["futureofyou_1","futureofyou_73"],"tags":["futureofyou_190","futureofyou_61","futureofyou_1056","futureofyou_173","futureofyou_275"],"featImg":"futureofyou_440581","label":"source_futureofyou_440580"},"futureofyou_440512":{"type":"posts","id":"futureofyou_440512","meta":{"index":"posts_1591205157","site":"futureofyou","id":"440512","score":null,"sort":[1522179023000]},"guestAuthors":[],"slug":"antibiotic-resistance-is-globally-on-the-rise-raising-alarms","title":"Antibiotic Resistance is Globally On the Rise, Raising Alarms","publishDate":1522179023,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{},"content":"\u003cp>The development of antibiotics in the middle of the 20th century was one of the greatest achievements of modern medicine. Penicillin and its pharmaceutical cousins \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4378521/\" target=\"_blank\" rel=\"noopener\">saved millions\u003c/a> of lives. But like a magic potion given to the world by a stern fairy, antibiotics come with a catch — If you abuse them, you lose them.\u003c/p>\n\u003cp>For decades, scientists have been \u003ca href=\"https://www.kqed.org/futureofyou/100905/superbugs\" target=\"_blank\" rel=\"noopener\">warning that antibiotic resistance\u003c/a> is on the rise globally because of misuse of the drugs.\u003c/p>\n\u003cp>But a new report makes it clear that the world is not listening.[contextly_sidebar id=\"KJZOa7uMNIN4ArNMyMOA5manjU869PnC\"]\u003c/p>\n\u003cp>Between the year 2000 and 2015 human consumption of antibiotics globally rose 65 percent — to an astounding 42 billion doses a year. \"We wanted to examine global use of antibiotics because once resistance emerges in one place it can spread anywhere,\" says Eili Klein, a fellow at the Center for Disease Dynamics, Economics and Policy in Washington and the lead author of the new report, which was published Monday in the \u003ca href=\"http://www.pnas.org/content/early/2018/03/20/1717295115\" target=\"_blank\" rel=\"noopener\">Proceedings of the National Academy of Sciences\u003c/a>.\u003c/p>\n\u003cp>Along with his colleagues Klein found that there was a dramatic rise in antibiotic use over the last 15 years in low- and middle-income countries.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\"A place like India, which has one of the highest populations in the world, saw enormous gains in antibiotic use both overall and on a per capita gain basis,\" says Klein.[contextly_sidebar id=\"SmtZzzk0FHpRcMcZ48thm4EPcrSnAjnT\"]\u003c/p>\n\u003cp>Antibiotic use more than doubled in India between the year 2000 and 2015. It was up 79 percent in China and 65 percent in Pakistan. Some of that increase was due to population growth but it wasn't just that. Overall sales were up.\u003c/p>\n\u003cp>So the report makes it clear that the average person in India, China or Pakistan is taking far more antibiotics now than they were a decade and half ago.\u003c/p>\n\u003cp>Western countries didn't see the sharp rise in antibiotics but they also failed to cut overall consumption.\u003c/p>\n\u003cp>\"In high-income countries reducing inappropriate use has not really ... in most countries ... driven down per capita use rates in the last 15 years,\" Klein says.\u003c/p>\n\u003cp>Lance Price, director of the Antibiotic Resistance Action Center at George Washington University, is concerned about this increase in antibiotic use.[contextly_sidebar id=\"lnBKX8143Mq00xj3zZD6AuQQqZq3rGIR\"]\u003c/p>\n\u003cp>\"The biggest driver for the evolution of superbugs is the use of antibiotics,\" Price says. Every time a bacteria is exposed to an antibiotic but isn't killed by it, it has the potential to develop resistance. The evolutionary math is fairly simple. \"The more we use antibiotics,\" he explains, \"the more we are going to encourage the growth of these bacteria that are resistant to them.\"\u003c/p>\n\u003cp>Hospitals around the world increasingly have been reporting bacterial infections that don't respond to traditional antibiotics.\u003c/p>\n\u003cp>\"Then you have these extreme cases like the woman [in Nevada] just about a year ago who died of an infection that was resistant to 26 different antibiotics,\" Price says. \"So the bacteria are out there that are resistant to everything, and they are becoming more and more prevalent.\"\u003c/p>\n\u003cp>Health officials worry about so much growth in antibiotic use in low- and middle-income countries because these drugs are often available there without a prescription. So the potential for misuse is high. Also Price notes that poor sanitation in impoverished nations adds to the problem. If a superbug develops in a patient who only has access to an outhouse, that bug is far more likely to spread into the local water supply than if that patient had access to a toilet connected to a sewage treatment plant.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>So the antibiotic fairy is not happy: If we don't change our ways she's going to slowly make the potion less and less powerful until one day it disappears.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Surge+In+Antibiotics+Is+A+Boon+For+Superbugs&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n","blocks":[],"excerpt":"Hospitals around the world are reporting bacterial infections that don't respond to routine antibiotics.","status":"publish","parent":0,"modified":1522179023,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":18,"wordCount":636},"headData":{"title":"Antibiotic Resistance is Globally On the Rise, Raising Alarms | KQED","description":"Hospitals around the world are reporting bacterial infections that don't respond to routine antibiotics.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Antibiotic Resistance is Globally On the Rise, Raising Alarms","datePublished":"2018-03-27T19:30:23.000Z","dateModified":"2018-03-27T19:30:23.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"440512 https://ww2.kqed.org/futureofyou/?p=440512","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/03/27/antibiotic-resistance-is-globally-on-the-rise-raising-alarms/","disqusTitle":"Antibiotic Resistance is Globally On the Rise, Raising Alarms","source":"Health","nprImageCredit":"Katie Park","nprByline":"Jason Beaubien\u003cbr />NPR Goats and Soda","nprImageAgency":"NPR","nprStoryId":"597014559","nprApiLink":"http://api.npr.org/query?id=597014559&apiKey=MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004","nprHtmlLink":"https://www.npr.org/sections/goatsandsoda/2018/03/26/597014559/surge-in-antibiotics-is-a-boon-for-superbugs?ft=nprml&f=597014559","nprRetrievedStory":"1","nprPubDate":"Mon, 26 Mar 2018 21:49:00 -0400","nprStoryDate":"Mon, 26 Mar 2018 18:04:38 -0400","nprLastModifiedDate":"Mon, 26 Mar 2018 18:04:38 -0400","nprAudio":"https://ondemand.npr.org/anon.npr-mp3/npr/atc/2018/03/20180326_atc_antiobiotic_use_is_skyrocketing.mp3?orgId=1&topicId=1001&d=191&p=2&story=597014559&ft=nprml&f=597014559","nprAudioM3u":"http://api.npr.org/m3u/1597100833-ae8218.m3u?orgId=1&topicId=1001&d=191&p=2&story=597014559&ft=nprml&f=597014559","path":"/futureofyou/440512/antibiotic-resistance-is-globally-on-the-rise-raising-alarms","audioUrl":"https://ondemand.npr.org/anon.npr-mp3/npr/atc/2018/03/20180326_atc_antiobiotic_use_is_skyrocketing.mp3?orgId=1&topicId=1001&d=191&p=2&story=597014559&ft=nprml&f=597014559","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>The development of antibiotics in the middle of the 20th century was one of the greatest achievements of modern medicine. Penicillin and its pharmaceutical cousins \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4378521/\" target=\"_blank\" rel=\"noopener\">saved millions\u003c/a> of lives. But like a magic potion given to the world by a stern fairy, antibiotics come with a catch — If you abuse them, you lose them.\u003c/p>\n\u003cp>For decades, scientists have been \u003ca href=\"https://www.kqed.org/futureofyou/100905/superbugs\" target=\"_blank\" rel=\"noopener\">warning that antibiotic resistance\u003c/a> is on the rise globally because of misuse of the drugs.\u003c/p>\n\u003cp>But a new report makes it clear that the world is not listening.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Between the year 2000 and 2015 human consumption of antibiotics globally rose 65 percent — to an astounding 42 billion doses a year. \"We wanted to examine global use of antibiotics because once resistance emerges in one place it can spread anywhere,\" says Eili Klein, a fellow at the Center for Disease Dynamics, Economics and Policy in Washington and the lead author of the new report, which was published Monday in the \u003ca href=\"http://www.pnas.org/content/early/2018/03/20/1717295115\" target=\"_blank\" rel=\"noopener\">Proceedings of the National Academy of Sciences\u003c/a>.\u003c/p>\n\u003cp>Along with his colleagues Klein found that there was a dramatic rise in antibiotic use over the last 15 years in low- and middle-income countries.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\"A place like India, which has one of the highest populations in the world, saw enormous gains in antibiotic use both overall and on a per capita gain basis,\" says Klein.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Antibiotic use more than doubled in India between the year 2000 and 2015. It was up 79 percent in China and 65 percent in Pakistan. Some of that increase was due to population growth but it wasn't just that. Overall sales were up.\u003c/p>\n\u003cp>So the report makes it clear that the average person in India, China or Pakistan is taking far more antibiotics now than they were a decade and half ago.\u003c/p>\n\u003cp>Western countries didn't see the sharp rise in antibiotics but they also failed to cut overall consumption.\u003c/p>\n\u003cp>\"In high-income countries reducing inappropriate use has not really ... in most countries ... driven down per capita use rates in the last 15 years,\" Klein says.\u003c/p>\n\u003cp>Lance Price, director of the Antibiotic Resistance Action Center at George Washington University, is concerned about this increase in antibiotic use.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>\"The biggest driver for the evolution of superbugs is the use of antibiotics,\" Price says. Every time a bacteria is exposed to an antibiotic but isn't killed by it, it has the potential to develop resistance. The evolutionary math is fairly simple. \"The more we use antibiotics,\" he explains, \"the more we are going to encourage the growth of these bacteria that are resistant to them.\"\u003c/p>\n\u003cp>Hospitals around the world increasingly have been reporting bacterial infections that don't respond to traditional antibiotics.\u003c/p>\n\u003cp>\"Then you have these extreme cases like the woman [in Nevada] just about a year ago who died of an infection that was resistant to 26 different antibiotics,\" Price says. \"So the bacteria are out there that are resistant to everything, and they are becoming more and more prevalent.\"\u003c/p>\n\u003cp>Health officials worry about so much growth in antibiotic use in low- and middle-income countries because these drugs are often available there without a prescription. So the potential for misuse is high. Also Price notes that poor sanitation in impoverished nations adds to the problem. If a superbug develops in a patient who only has access to an outhouse, that bug is far more likely to spread into the local water supply than if that patient had access to a toilet connected to a sewage treatment plant.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>So the antibiotic fairy is not happy: If we don't change our ways she's going to slowly make the potion less and less powerful until one day it disappears.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Surge+In+Antibiotics+Is+A+Boon+For+Superbugs&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/440512/antibiotic-resistance-is-globally-on-the-rise-raising-alarms","authors":["byline_futureofyou_440512"],"categories":["futureofyou_1060","futureofyou_1","futureofyou_73"],"tags":["futureofyou_1184","futureofyou_952","futureofyou_61","futureofyou_177","futureofyou_173"],"collections":["futureofyou_1093"],"featImg":"futureofyou_440513","label":"source_futureofyou_440512"},"futureofyou_440409":{"type":"posts","id":"futureofyou_440409","meta":{"index":"posts_1591205157","site":"futureofyou","id":"440409","score":null,"sort":[1521829213000]},"guestAuthors":[],"slug":"doctors-and-drugmakers-may-be-looking-at-your-social-media","title":"Doctors and Drugmakers May Be Looking at Your Social Media","publishDate":1521829213,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{},"content":"\u003cp>When Allison Ruddick was diagnosed with stage 3 colorectal cancer in October 2014, she turned to the world of hashtags.\u003c/p>\n\u003cp>After her initial diagnosis it wasn't clear if the cancer had metastasized, so she was in for a nerve-wracking wait, she says. She wanted outside advice. \"But they don't really give you a handbook, so you search kind of anywhere for answers,\" Ruddick says. \"Social media was one of the first places I went.\"\u003c/p>\n\u003cp>Under the hashtags #colorectalcancer and #nevertooyoung on Facebook, Twitter and Instagram, other patients were sharing a fuller picture of their experience with cancer treatments.[contextly_sidebar id=\"cdQjHydnnhf1qm80VAQ5VOhZ1zDgEbZ8\"]\u003c/p>\n\u003cp>Later she found even more advice on specialized message boards. Patients posted everything from the details of their surgeries to the ice packs they liked best as they recovered. \"These weren't things that my doctor could tell me, and as much as I appreciate their expertise, it's also really limited by the fact that they've never really experienced any of this themselves,\" Ruddick says.\u003c/p>\n\u003cp>Partly because of that experience gap, doctors and drug companies are keen to learn from online communities, too. They're analyzing social networks to get a faster, wider look into how patients react to drugs, sometimes picking up information about side effects that clinical trials missed.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003cstrong>The Rule of Three\u003c/strong>\u003c/p>\n\u003cp>Stanford University dermatologist \u003ca href=\"https://profiles.stanford.edu/bernice-kwong\">Bernice Kwong\u003c/a> specializes in skin conditions that tag along with cancer treatments. In her practice and on patient message boards, she's constantly on the lookout for symptoms that could be drug reactions.\u003c/p>\n\u003cp>In January 2017, a patient came to Kwong's office with an unusual complaint\u003cstrong>. \u003c/strong>\"I've noticed that when I work out, I just get really hot,\" he told Kwong. \"I don't sweat anymore, and I used to sweat so much.\" He was taking a drug called Tarceva, or erlotinib, that's used against lung cancer.[contextly_sidebar id=\"YV4ALpzrjOrylquldVmESZ1WsJYER2Bg\"]\u003c/p>\n\u003cp>At first, Kwong thought the problem might be hormonal. But soon after, two more of her patients at Stanford on the same drug reported that they'd also stopped sweating. \"Anytime something hits three, I think, OK, I gotta look into this a little bit more,\" she says.\u003c/p>\n\u003cp>But she hadn't seen any reports before of a lack of sweating — hypohidrosis — as a side effect for Tarceva. Her sample size of three patients was small. She'd need more data to figure things out.\u003c/p>\n\u003cp>From talking with patients and perusing online forums, Kwong knew people discussed their treatments and side effects online. In fact, hundreds of thousands of people participate in support groups and communities she'd looked at on the website \u003ca href=\"https://www.inspire.com/\">Inspire\u003c/a>. She partnered with the site with the idea that its trove of patient reports could connect more dots between hypohidrosis and Tarceva.\u003c/p>\n\u003cp>\u003cstrong>A Sharper Data Set\u003c/strong>\u003c/p>\n\u003cp>Inspire's focused groups are filled with patients' experiences with diseases and treatment, so analyzing posts requires less filtering than Facebook or Twitter data would, says \u003ca href=\"https://profiles.stanford.edu/nigam-shah\">Nigam Shah\u003c/a>, a Stanford University bioinformatics specialist who collaborated with Kwong. It also helped that the skin reactions they were interested in are relatively easy for patients to describe.\u003c/p>\n\u003cp>Still, the posts on Inspire's boards are less precise than insurance claims and health records typically used for studies on side effects.\u003c/p>\n\u003cp>Take loss of sweating. Most doctors would refer to that as hypohidrosis, so a records-based study could focus on that phrase. In online message boards there's a lot of variety. One person's \"I can't sweat anymore\" might be another's \"I'm overheating.\"[contextly_sidebar id=\"b60xAgKbNdenisEddidkCVcmMXTjd0Aj\"]\u003c/p>\n\u003cp>Kwong, Shah and their colleagues used a deep learning algorithm to process the phrases surrounding reports of symptoms, basically finding contextual clues to identify the different ways patients referred to side effects.\u003c/p>\n\u003cp>In 8 million posts on Inspire from a 10-year period, 4,909 users mentioned Tarceva, or erlotinib generically. Although clinical reports don't link the drug and hypohidrosis, 23 patients wrote about the medicine and loss of sweating in the same post — a statistically significant connection, Kwong says. The research group's findings \u003ca href=\"https://jamanetwork.com/journals/jamaoncology/article-abstract/2673831?redirect=true\" target=\"_blank\" rel=\"noopener\">were published\u003c/a> in \u003cem>JAMA Oncology\u003c/em> in March.\u003c/p>\n\u003cp>Using the same approach to monitor posts about a different class of immunotherapy cancer drugs, the researchers found mentions of autoimmune blistering that also predated the clinical reports of the side effect.\u003c/p>\n\u003cp>Given the stakes of cancer treatment, Kwong says she's inclined to help patients manage side effects instead of stopping a given drug. But earlier alerts from systems like this could have made a difference in her practice. \"If we had had this program already, I would've been looking out for [blistering] sooner and maybe I would've noticed it earlier in some patients,\" Kwong says.\u003c/p>\n\u003cp>\u003cstrong>How Clinical Trials Miss Side Effects\u003c/strong>\u003c/p>\n\u003cp>From numbers alone, it's no surprise that clinical trials for drugs don't pick up every side effect. The Food and Drug Administration first \u003ca href=\"https://www.accessdata.fda.gov/drugsatfda_docs/nda/2004/21-743_Tarceva_StatR.PDF\">approved\u003c/a> Tarceva in 2004 on the basis of a trial that enrolled 731 patients, 488 of whom received the drug. Uncommon effects might not show up in a group that size.\u003c/p>\n\u003cp>On Inspire's message boards, more than 10 times as many patients reported using Tarceva, so it's reasonable to imagine that online posts could include reports of rarer side effects.\u003c/p>\n\u003cp>And while drug trials do collect data on side effects, their overriding goal is to find out whether or not a drug works, says \u003ca href=\"http://bioethics.hms.harvard.edu/person/faculty-members/aaron-kesselheim\">Dr. Aaron Kesselheim\u003c/a>, a professor of medicine at Harvard University. \"After a drug is approved, it is absolutely essential to continue to observe, follow and study the drug rigorously as it's used in a larger population to try to really get a handle on the safety of the drug,\" he says.[contextly_sidebar id=\"JGYGYdpwADzgX2U5wdZePXnIkUOkoc8q\"]\u003c/p>\n\u003cp>Collecting data about a drug from insurance claims and health records typically happens with quite a time lag. So mining the Internet and social media for casual patient reports is tempting, Kesselheim says, because of its potential scale and speed. But the approach also has drawbacks. \"You just get this tidal wave of data, and it's hard to know how to assess it in a rigorous and thoughtful fashion,\" he says.\u003c/p>\n\u003cp>That hasn't stopped drug companies from wading in. Roche has \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/29446035\">sampled\u003c/a> mentions of their products from Twitter, Tumblr, Facebook and blogs to learn more about drug safety. GlaxoSmithKline has tried it too, \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/26798054\">analyzing\u003c/a> millions of mentions of drugs from Twitter and Facebook.\u003c/p>\n\u003cp>Much of the work published so far has focused on drug reactions. But scraping public social media data isn't just a matter of product safety. The company \u003ca href=\"https://www.synthesio.com/social-listening-pharma-healthcare/\">Synthesio\u003c/a> touts its social data services for drugmakers as a way to answer customer questions, conduct market research and influence purchasing.\u003c/p>\n\u003cp>\u003cstrong>Surfing Responsibly\u003c/strong>\u003c/p>\n\u003cp>In terms of extending studies to mine even bigger networks, like Twitter or Facebook, for potential side effects, Kesselheim points to issues of representation and privacy. As with any analysis, a deep learning model like the one Shah used on the Inspire message boards can only make conclusions about the information it \u003cem>sees\u003c/em>.\u003c/p>\n\u003cp>And it's hard to guarantee that message boards and social media represent all patients. In 2012, researchers gave 231 breast cancer patients in rural Michigan and Wisconsin computers, Internet access and training to use an online cancer support group. The researchers \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3556823/\">found\u003c/a> that white women were much more likely to log on and post in the group than black women. Younger women were also more likely to post information.\u003c/p>\n\u003cp>While the long-standing approach to post-approval drug studies — using health records and claims data — may be slower, Kesselheim says, they're more established. \"There are methodologies and tools that you can use in claims data to try to make sure that you are making conclusions that can be generalizable across different races and ethnicity and genders and parts of America,\" he says.\u003c/p>\n\u003cp>There's also the issue of privacy — patients' health records are protected by the Health Insurance Portability and Accountability Act of 1996, whereas public data online aren't, Kesselheim says.\u003c/p>\n\u003cp>For Stanford researcher Shah, this wasn't an issue. Inspire's privacy statement tells patients their posts may be used for research if they're not private, and Shah feels comfortable following common sense rules when using public data. \"As in, if somebody did [something] with my data and I would be upset, don't do that with someone else's data,\" he says.\u003c/p>\n\u003cp>But the newness of social media makes Kesselheim wary. \"There are big questions that remain about how patient privacy is upheld in those social media contexts, and I think that's a really big issue to think about moving forward as people are trying to use those outlets to provide insight into drug safety and side effects.\"\u003c/p>\n\u003cp>As a patient, Ruddick isn't bothered by the idea of researchers and pharmaceutical companies studying data from social media and patient message boards, as long as the data are public or there's mention of data sharing in a privacy statement.\u003c/p>\n\u003cp>She works as a communications director in New York City, so she's thought a lot about the nature of information online. \"If I'm putting something out there on the Internet, it's for the Internet. I know the world is going to see it,\" Ruddick says.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>She knows other patients might feel differently, but she's optimistic that analyzing patients' interactions online could improve the treatments available. \"It's one thing, being in a lab and developing these drugs,\" she says. \"But it's a completely different thing to see how they're being used out there in the world, and to see how they're affecting somebody's life.\"\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=How+Social+Media+Can+Reveal+Overlooked+Drug+Reactions&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n","blocks":[],"excerpt":"Doctors and drugmakers are looking at patients' experiences on social media for clues on problems.","status":"publish","parent":0,"modified":1521829246,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":38,"wordCount":1644},"headData":{"title":"Doctors and Drugmakers May Be Looking at Your Social Media | KQED","description":"Doctors and drugmakers are looking at patients' experiences on social media for clues on problems.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Doctors and Drugmakers May Be Looking at Your Social Media","datePublished":"2018-03-23T18:20:13.000Z","dateModified":"2018-03-23T18:20:46.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"440409 https://ww2.kqed.org/futureofyou/?p=440409","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/03/23/doctors-and-drugmakers-may-be-looking-at-your-social-media/","disqusTitle":"Doctors and Drugmakers May Be Looking at Your Social Media","source":"DIY Health","nprImageCredit":"Roy Scott","nprByline":"Menaka Wilhelm\u003cbr />NPR Shots","nprImageAgency":"Getty Images/Ikon Images","nprStoryId":"593914075","nprApiLink":"http://api.npr.org/query?id=593914075&apiKey=MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004","nprHtmlLink":"https://www.npr.org/sections/health-shots/2018/03/23/593914075/how-social-media-can-reveal-overlooked-drug-reactions?ft=nprml&f=593914075","nprRetrievedStory":"1","nprPubDate":"Fri, 23 Mar 2018 11:28:00 -0400","nprStoryDate":"Fri, 23 Mar 2018 11:28:32 -0400","nprLastModifiedDate":"Fri, 23 Mar 2018 11:28:32 -0400","path":"/futureofyou/440409/doctors-and-drugmakers-may-be-looking-at-your-social-media","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>When Allison Ruddick was diagnosed with stage 3 colorectal cancer in October 2014, she turned to the world of hashtags.\u003c/p>\n\u003cp>After her initial diagnosis it wasn't clear if the cancer had metastasized, so she was in for a nerve-wracking wait, she says. She wanted outside advice. \"But they don't really give you a handbook, so you search kind of anywhere for answers,\" Ruddick says. \"Social media was one of the first places I went.\"\u003c/p>\n\u003cp>Under the hashtags #colorectalcancer and #nevertooyoung on Facebook, Twitter and Instagram, other patients were sharing a fuller picture of their experience with cancer treatments.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Later she found even more advice on specialized message boards. Patients posted everything from the details of their surgeries to the ice packs they liked best as they recovered. \"These weren't things that my doctor could tell me, and as much as I appreciate their expertise, it's also really limited by the fact that they've never really experienced any of this themselves,\" Ruddick says.\u003c/p>\n\u003cp>Partly because of that experience gap, doctors and drug companies are keen to learn from online communities, too. They're analyzing social networks to get a faster, wider look into how patients react to drugs, sometimes picking up information about side effects that clinical trials missed.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cstrong>The Rule of Three\u003c/strong>\u003c/p>\n\u003cp>Stanford University dermatologist \u003ca href=\"https://profiles.stanford.edu/bernice-kwong\">Bernice Kwong\u003c/a> specializes in skin conditions that tag along with cancer treatments. In her practice and on patient message boards, she's constantly on the lookout for symptoms that could be drug reactions.\u003c/p>\n\u003cp>In January 2017, a patient came to Kwong's office with an unusual complaint\u003cstrong>. \u003c/strong>\"I've noticed that when I work out, I just get really hot,\" he told Kwong. \"I don't sweat anymore, and I used to sweat so much.\" He was taking a drug called Tarceva, or erlotinib, that's used against lung cancer.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>At first, Kwong thought the problem might be hormonal. But soon after, two more of her patients at Stanford on the same drug reported that they'd also stopped sweating. \"Anytime something hits three, I think, OK, I gotta look into this a little bit more,\" she says.\u003c/p>\n\u003cp>But she hadn't seen any reports before of a lack of sweating — hypohidrosis — as a side effect for Tarceva. Her sample size of three patients was small. She'd need more data to figure things out.\u003c/p>\n\u003cp>From talking with patients and perusing online forums, Kwong knew people discussed their treatments and side effects online. In fact, hundreds of thousands of people participate in support groups and communities she'd looked at on the website \u003ca href=\"https://www.inspire.com/\">Inspire\u003c/a>. She partnered with the site with the idea that its trove of patient reports could connect more dots between hypohidrosis and Tarceva.\u003c/p>\n\u003cp>\u003cstrong>A Sharper Data Set\u003c/strong>\u003c/p>\n\u003cp>Inspire's focused groups are filled with patients' experiences with diseases and treatment, so analyzing posts requires less filtering than Facebook or Twitter data would, says \u003ca href=\"https://profiles.stanford.edu/nigam-shah\">Nigam Shah\u003c/a>, a Stanford University bioinformatics specialist who collaborated with Kwong. It also helped that the skin reactions they were interested in are relatively easy for patients to describe.\u003c/p>\n\u003cp>Still, the posts on Inspire's boards are less precise than insurance claims and health records typically used for studies on side effects.\u003c/p>\n\u003cp>Take loss of sweating. Most doctors would refer to that as hypohidrosis, so a records-based study could focus on that phrase. In online message boards there's a lot of variety. One person's \"I can't sweat anymore\" might be another's \"I'm overheating.\"\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Kwong, Shah and their colleagues used a deep learning algorithm to process the phrases surrounding reports of symptoms, basically finding contextual clues to identify the different ways patients referred to side effects.\u003c/p>\n\u003cp>In 8 million posts on Inspire from a 10-year period, 4,909 users mentioned Tarceva, or erlotinib generically. Although clinical reports don't link the drug and hypohidrosis, 23 patients wrote about the medicine and loss of sweating in the same post — a statistically significant connection, Kwong says. The research group's findings \u003ca href=\"https://jamanetwork.com/journals/jamaoncology/article-abstract/2673831?redirect=true\" target=\"_blank\" rel=\"noopener\">were published\u003c/a> in \u003cem>JAMA Oncology\u003c/em> in March.\u003c/p>\n\u003cp>Using the same approach to monitor posts about a different class of immunotherapy cancer drugs, the researchers found mentions of autoimmune blistering that also predated the clinical reports of the side effect.\u003c/p>\n\u003cp>Given the stakes of cancer treatment, Kwong says she's inclined to help patients manage side effects instead of stopping a given drug. But earlier alerts from systems like this could have made a difference in her practice. \"If we had had this program already, I would've been looking out for [blistering] sooner and maybe I would've noticed it earlier in some patients,\" Kwong says.\u003c/p>\n\u003cp>\u003cstrong>How Clinical Trials Miss Side Effects\u003c/strong>\u003c/p>\n\u003cp>From numbers alone, it's no surprise that clinical trials for drugs don't pick up every side effect. The Food and Drug Administration first \u003ca href=\"https://www.accessdata.fda.gov/drugsatfda_docs/nda/2004/21-743_Tarceva_StatR.PDF\">approved\u003c/a> Tarceva in 2004 on the basis of a trial that enrolled 731 patients, 488 of whom received the drug. Uncommon effects might not show up in a group that size.\u003c/p>\n\u003cp>On Inspire's message boards, more than 10 times as many patients reported using Tarceva, so it's reasonable to imagine that online posts could include reports of rarer side effects.\u003c/p>\n\u003cp>And while drug trials do collect data on side effects, their overriding goal is to find out whether or not a drug works, says \u003ca href=\"http://bioethics.hms.harvard.edu/person/faculty-members/aaron-kesselheim\">Dr. Aaron Kesselheim\u003c/a>, a professor of medicine at Harvard University. \"After a drug is approved, it is absolutely essential to continue to observe, follow and study the drug rigorously as it's used in a larger population to try to really get a handle on the safety of the drug,\" he says.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Collecting data about a drug from insurance claims and health records typically happens with quite a time lag. So mining the Internet and social media for casual patient reports is tempting, Kesselheim says, because of its potential scale and speed. But the approach also has drawbacks. \"You just get this tidal wave of data, and it's hard to know how to assess it in a rigorous and thoughtful fashion,\" he says.\u003c/p>\n\u003cp>That hasn't stopped drug companies from wading in. Roche has \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/29446035\">sampled\u003c/a> mentions of their products from Twitter, Tumblr, Facebook and blogs to learn more about drug safety. GlaxoSmithKline has tried it too, \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/26798054\">analyzing\u003c/a> millions of mentions of drugs from Twitter and Facebook.\u003c/p>\n\u003cp>Much of the work published so far has focused on drug reactions. But scraping public social media data isn't just a matter of product safety. The company \u003ca href=\"https://www.synthesio.com/social-listening-pharma-healthcare/\">Synthesio\u003c/a> touts its social data services for drugmakers as a way to answer customer questions, conduct market research and influence purchasing.\u003c/p>\n\u003cp>\u003cstrong>Surfing Responsibly\u003c/strong>\u003c/p>\n\u003cp>In terms of extending studies to mine even bigger networks, like Twitter or Facebook, for potential side effects, Kesselheim points to issues of representation and privacy. As with any analysis, a deep learning model like the one Shah used on the Inspire message boards can only make conclusions about the information it \u003cem>sees\u003c/em>.\u003c/p>\n\u003cp>And it's hard to guarantee that message boards and social media represent all patients. In 2012, researchers gave 231 breast cancer patients in rural Michigan and Wisconsin computers, Internet access and training to use an online cancer support group. The researchers \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3556823/\">found\u003c/a> that white women were much more likely to log on and post in the group than black women. Younger women were also more likely to post information.\u003c/p>\n\u003cp>While the long-standing approach to post-approval drug studies — using health records and claims data — may be slower, Kesselheim says, they're more established. \"There are methodologies and tools that you can use in claims data to try to make sure that you are making conclusions that can be generalizable across different races and ethnicity and genders and parts of America,\" he says.\u003c/p>\n\u003cp>There's also the issue of privacy — patients' health records are protected by the Health Insurance Portability and Accountability Act of 1996, whereas public data online aren't, Kesselheim says.\u003c/p>\n\u003cp>For Stanford researcher Shah, this wasn't an issue. Inspire's privacy statement tells patients their posts may be used for research if they're not private, and Shah feels comfortable following common sense rules when using public data. \"As in, if somebody did [something] with my data and I would be upset, don't do that with someone else's data,\" he says.\u003c/p>\n\u003cp>But the newness of social media makes Kesselheim wary. \"There are big questions that remain about how patient privacy is upheld in those social media contexts, and I think that's a really big issue to think about moving forward as people are trying to use those outlets to provide insight into drug safety and side effects.\"\u003c/p>\n\u003cp>As a patient, Ruddick isn't bothered by the idea of researchers and pharmaceutical companies studying data from social media and patient message boards, as long as the data are public or there's mention of data sharing in a privacy statement.\u003c/p>\n\u003cp>She works as a communications director in New York City, so she's thought a lot about the nature of information online. \"If I'm putting something out there on the Internet, it's for the Internet. I know the world is going to see it,\" Ruddick says.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>She knows other patients might feel differently, but she's optimistic that analyzing patients' interactions online could improve the treatments available. \"It's one thing, being in a lab and developing these drugs,\" she says. \"But it's a completely different thing to see how they're being used out there in the world, and to see how they're affecting somebody's life.\"\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=How+Social+Media+Can+Reveal+Overlooked+Drug+Reactions&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/440409/doctors-and-drugmakers-may-be-looking-at-your-social-media","authors":["byline_futureofyou_440409"],"categories":["futureofyou_1060","futureofyou_1","futureofyou_73"],"tags":["futureofyou_952","futureofyou_61","futureofyou_173","futureofyou_931","futureofyou_174","futureofyou_198"],"collections":["futureofyou_1093"],"featImg":"futureofyou_440410","label":"source_futureofyou_440409"},"futureofyou_439399":{"type":"posts","id":"futureofyou_439399","meta":{"index":"posts_1591205157","site":"futureofyou","id":"439399","score":null,"sort":[1518205487000]},"guestAuthors":[],"slug":"invisibilia-the-otherworldly-alien-hand-syndrome-animated","title":"'Invisibilia': The Otherworldly Alien Hand Syndrome, Animated","publishDate":1518205487,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>https://youtu.be/9FfBT_LuJvc\u003c/p>\n\u003cp>Karen Byrne's left hand sometimes operates on its own terms. It has unbuttoned shirts and stubbed out cigarettes, without her permission. Oh, and a few times, her own hand has slapped her across the face.\u003c/p>\n\u003cp>This is a documented medical occurrence, not a premise for a Jim Carrey movie. The condition's name? Alien hand syndrome.\u003c/p>\n\u003cp>Invisibilia featured Byrne and her alien hand last summer, and Giant Ant Studios recently created an otherworldly animation of Byrne's story.\u003c/p>\n\u003cp>Byrne says she's gotten used to her left hand's new attitude, but alien hand syndrome is a pesky, strange condition.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Imagine, as another patient has reported, sitting down to play the piano, only to have one hand levitate far above the piano keys as you try to practice. It's not that you've changed your mind; your goal is still to play a sonata. But that hand — still yours, and now also not yours — is obeying new directions, and you didn't come up with them consciously.\u003c/p>\n\u003cp>For the pianist and Byrne, and many other cases, alien hand symptoms appears rooted in disruption of communication through the corpus callosum. That's the set of fibers that connects the right and left sides of the brain.\u003c/p>\n\u003cp>[contextly_sidebar id=\"5PLqzXEE43iwM1zJ6lR2DoxnyTA5eYuw\"]\u003c/p>\n\u003cp>The pianist's corpus callosum showed missing connections on an MRI, and Byrne's left hand developed its disobedience after a surgeon severed her corpus callosum in an operation to treat epileptic seizures.\u003c/p>\n\u003cp>No matter how it arises, alien hand syndrome points out something important about our brains: The symphony of our minds depends on the interconnectedness of different regions of the brain, each playing its own role.\u003c/p>\n\u003cp>More unexpected stories of why and how thoughts and feelings work the way they do are on deck in the new season of Invisibilia. It returns March 9. You'll find new episodes — and all the past episodes — on the podcast's page, NPR One, or wherever you get your podcasts.\u003c/p>\n\u003cp>For the pianist and Byrne, and many other cases, alien hand symptoms appears rooted in disruption of communication through the corpus callosum. That's the set of fibers that connects the right and left sides of the brain.\u003c/p>\n\u003cp>The pianist's corpus callosum showed missing connections on an MRI, and Byrne's left hand developed its disobedience after a surgeon severed her corpus callosum in an operation to treat epileptic seizures.\u003c/p>\n\u003cp>No matter how it arises, alien hand syndrome points out something important about our brains: The symphony of our minds depends on the interconnectedness of different regions of the brain, each playing its own role.\u003c/p>\n\u003cp>More unexpected stories of why and how thoughts and feelings work the way they do are on deck in the new season of Invisibilia. It returns March 9. You'll find new episodes — and all the past episodes — on the podcast's page, NPR One, or wherever you get your podcasts.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Copyright 2018 NPR. To see more, visit \u003ca href=\"http://www.npr.org/\">http://www.npr.org/\u003c/a>.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=A+Tiny+Pulse+Of+Electricity+Can+Help+The+Brain+Form+Lasting+Memories&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/p>\n\n","blocks":[],"excerpt":"What is it like to live with a hand that acts seemingly on its own, known as alien hand syndrome?","status":"publish","parent":0,"modified":1518211499,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":17,"wordCount":512},"headData":{"title":"'Invisibilia': The Otherworldly Alien Hand Syndrome, Animated | KQED","description":"What is it like to live with a hand that acts seemingly on its own, known as alien hand syndrome?","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"'Invisibilia': The Otherworldly Alien Hand Syndrome, Animated","datePublished":"2018-02-09T19:44:47.000Z","dateModified":"2018-02-09T21:24:59.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"439399 https://ww2.kqed.org/futureofyou/?p=439399","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/02/09/invisibilia-the-otherworldly-alien-hand-syndrome-animated/","disqusTitle":"'Invisibilia': The Otherworldly Alien Hand Syndrome, Animated","nprByline":"Menaka Wilhelm\u003cbr />NPR Shots","path":"/futureofyou/439399/invisibilia-the-otherworldly-alien-hand-syndrome-animated","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\u003cp>\u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutube'>\n \u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutubeInside'>\n \u003ciframe\n loading='lazy'\n class='utils-parseShortcode-shortcodes-__youtubeShortcode__youtubePlayer'\n type='text/html'\n src='//www.youtube.com/embed/9FfBT_LuJvc'\n title='//www.youtube.com/embed/9FfBT_LuJvc'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>\u003cp>Karen Byrne's left hand sometimes operates on its own terms. It has unbuttoned shirts and stubbed out cigarettes, without her permission. Oh, and a few times, her own hand has slapped her across the face.\u003c/p>\n\u003cp>This is a documented medical occurrence, not a premise for a Jim Carrey movie. The condition's name? Alien hand syndrome.\u003c/p>\n\u003cp>Invisibilia featured Byrne and her alien hand last summer, and Giant Ant Studios recently created an otherworldly animation of Byrne's story.\u003c/p>\n\u003cp>Byrne says she's gotten used to her left hand's new attitude, but alien hand syndrome is a pesky, strange condition.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Imagine, as another patient has reported, sitting down to play the piano, only to have one hand levitate far above the piano keys as you try to practice. It's not that you've changed your mind; your goal is still to play a sonata. But that hand — still yours, and now also not yours — is obeying new directions, and you didn't come up with them consciously.\u003c/p>\n\u003cp>For the pianist and Byrne, and many other cases, alien hand symptoms appears rooted in disruption of communication through the corpus callosum. That's the set of fibers that connects the right and left sides of the brain.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>The pianist's corpus callosum showed missing connections on an MRI, and Byrne's left hand developed its disobedience after a surgeon severed her corpus callosum in an operation to treat epileptic seizures.\u003c/p>\n\u003cp>No matter how it arises, alien hand syndrome points out something important about our brains: The symphony of our minds depends on the interconnectedness of different regions of the brain, each playing its own role.\u003c/p>\n\u003cp>More unexpected stories of why and how thoughts and feelings work the way they do are on deck in the new season of Invisibilia. It returns March 9. You'll find new episodes — and all the past episodes — on the podcast's page, NPR One, or wherever you get your podcasts.\u003c/p>\n\u003cp>For the pianist and Byrne, and many other cases, alien hand symptoms appears rooted in disruption of communication through the corpus callosum. That's the set of fibers that connects the right and left sides of the brain.\u003c/p>\n\u003cp>The pianist's corpus callosum showed missing connections on an MRI, and Byrne's left hand developed its disobedience after a surgeon severed her corpus callosum in an operation to treat epileptic seizures.\u003c/p>\n\u003cp>No matter how it arises, alien hand syndrome points out something important about our brains: The symphony of our minds depends on the interconnectedness of different regions of the brain, each playing its own role.\u003c/p>\n\u003cp>More unexpected stories of why and how thoughts and feelings work the way they do are on deck in the new season of Invisibilia. It returns March 9. You'll find new episodes — and all the past episodes — on the podcast's page, NPR One, or wherever you get your podcasts.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Copyright 2018 NPR. To see more, visit \u003ca href=\"http://www.npr.org/\">http://www.npr.org/\u003c/a>.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=A+Tiny+Pulse+Of+Electricity+Can+Help+The+Brain+Form+Lasting+Memories&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/439399/invisibilia-the-otherworldly-alien-hand-syndrome-animated","authors":["byline_futureofyou_439399"],"categories":["futureofyou_1"],"tags":["futureofyou_56","futureofyou_141","futureofyou_61","futureofyou_173","futureofyou_1123"],"featImg":"futureofyou_439402","label":"futureofyou"},"futureofyou_439373":{"type":"posts","id":"futureofyou_439373","meta":{"index":"posts_1591205157","site":"futureofyou","id":"439373","score":null,"sort":[1518115987000]},"guestAuthors":[],"slug":"things-you-dont-say-to-the-terminally-ill","title":"'Everything Happens for a Reason' and Other Things Not to Say to Someone Terminally Ill","publishDate":1518115987,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{},"content":"\u003cp>Kate Bowler's new memoir, \u003cem>Everything Happens for a Reason And Other Lies I've Loved\u003c/em>, is a funny, intimate portrait of living in that nether space between life and death. In it, she shares her experiences with incurable stage 4 cancer and gives advice on what not to say to those who are terminally ill.\u003c/p>\n\u003caside class=\"alignright\">\n\u003cul>3 things not say to someone terminally ill, from author Kate Bowler...\n\u003cli>'Everything happens for a reason.'\u003c/li>\u003cli>'How are the treatments going?'\n\u003c/li>\u003cli>How are you really?\u003c/li>\u003c/ul>\n\u003c/aside>\n\u003cp>Bowler is also the host of\u003ca href=\"https://www.npr.org/podcasts/583447646/everything-happens\" target=\"_blank\" rel=\"noopener\"> Everything Happens\u003c/a>, a new podcast.\u003c/p>\n\u003cp>She writes that sometimes silence is the best response: \"The truth is that no one knows what to say. It's awkward. Pain is awkward. Tragedy is awkward. People's weird, suffering bodies are awkward. But take the advice of one man, who wrote to me with his policy: Show up and shut up.\"\u003c/p>\n\u003cp>\u003cstrong>Interview Highlights\u003c/strong>\u003c/p>\n\u003cp>\u003cstrong>On why she wrote Everything Happens For A Reason\u003c/strong>\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Suddenly at [age] 35, I get this stage 4 cancer diagnosis, and it's just like a bomb went off and everything around me is debris. And I'm thinking, \"Oh my gosh, did I actually maybe expect that everything was going to work out for me?\" And so I wrote the book more like a theological excavation project, like I was just trying to get down to the studs of what I really expected from my life. And I think I was a lot more sure than I realized ... maybe that I was the architect of my own life, that I could overcome anything with a little pluck and determination.\u003c/p>\n\u003cp>\u003cstrong>On how a cancer diagnosis changed her outlook on life\u003c/strong>\u003c/p>\n\u003cp>I kind of pictured my life like it was this life enhancement project, and like my life is like a bucket and I'm supposed to put all the things in the bucket. And the whole purpose is to figure out how to have as many good things coexisting at the same time.And then when everything falls apart, you totally have to switch imagination, like maybe instead, life is just vine to vine. And you're like grabbing onto something, and you're just hoping for dear life it doesn't break.\u003c/p>\n\u003cp>\u003cstrong>On how that diagnosis affected her relationship to friends and family\u003c/strong>\u003c/p>\n\u003cp>I went from feeling like a normal person to all of a sudden, like this spaghetti bowl of cancer. I was trying to learn how to give up really quickly, like looking at my beautiful husband and just immediately all the stuff you're supposed to say, which is just like, \"I have loved you forever,\" and \"All I want for you is love.\"\u003c/p>\n\u003cp>... You have these impossible thoughts like, \"You will live without me,\" and \"Please take care of our kid.\" And like you're trying to do all that hard work and then in the same moment, they're trying to rush in and say, \"We're going to fight this.\" There's all these plans they want to pour their certainty in, to remake the foundation. And there's this, kind of, almost terrible exchange, where you're trying to remake the world as it was. But it's all come apart.\u003c/p>\n\u003cp>\u003cstrong>On whether she has had conversations with her 4-year-old son about death\u003c/strong>\u003c/p>\n\u003cp>He is entirely impervious to all of this, in the best way. But I do think the thing that has radically changed is I really was, before, trying to create this little bubble around him and us, 'cause I thought, like, \"It's my job to protect you,\" and then I realized that I would be the worst thing that happened to him if this went badly.\u003c/p>\n\u003cp>So then I thought like, \"OK, parenting strategy change.\" And I thought, 'Well, if I can just teach you that there is still beauty in others in the midst of pain, then like, that's my job.\" So we work a lot on like, \"How are you feeling?\" like, \"I feel frustrated.\" And then getting him to notice the feelings of others.\u003c/p>\n\u003cp>\u003cstrong>On how she has learned to cope with negative news about her diagnosis\u003c/strong>\u003c/p>\n\u003cp>Well I have rules for when things are too sad, 'cause sometimes, just the reality of things really feels like an avalanche, and it's just going to sweep everything away. So I do make rules for the day, like don't talk about sad things after 9 p.m., so I try to make my day a little gentler. I try to make other people's day a little gentler. The other thing I do is I try really stupid stuff, like I got terrible news a couple months ago, which thankfully turned out to be a medical error.\u003c/p>\n\u003cp>It was a scan and it looked brutal, but I spent that week thinking like, \"This is my last year for sure.\" And it was weird because the next day, I turned to a friend and I said, \"Would you like to go visit the world's largest Ukrainian sausage?\" And he was like, \"Oh, I'm in.\"\u003c/p>\n\u003cp>\u003cstrong>On her list of things not to say to someone with terminal cancer, including \"How are the treatments going and how are you really?\" [book excerpt]\u003c/strong>\u003c/p>\n\u003cp>This is the toughest one of all. I can hear you trying to be in my world and be on my side. But picture the worst thing that's ever happened to you. Got it? Now try to put it in a sentence. Now say it aloud 50 times a day. Does your head hurt? Do you feel sad? Me too. So let's just see if I want to talk about it today, because sometimes I do and sometimes I want a hug and a recap of American Ninja Warrior.\u003c/p>\n\u003cp>\u003cem>Jeffrey Pierre and Miranda Kennedy produced and edited this interview for broadcast. Sydnee Monday and April Fulton adapted it for the Web.\u003c/em>\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Copyright 2018 NPR. To see more, visit \u003ca href=\"http://www.npr.org/\" target=\"_blank\" rel=\"noopener\">http://www.npr.org/\u003c/a>.\u003c/p>\n\n","blocks":[],"excerpt":"Kate Bowler's new memoir is a funny, intimate portrait of living in a nether space between life and death. ","status":"publish","parent":0,"modified":1518125074,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":23,"wordCount":1017},"headData":{"title":"'Everything Happens for a Reason' and Other Things Not to Say to Someone Terminally Ill | KQED","description":"Kate Bowler's new memoir is a funny, intimate portrait of living in a nether space between life and death. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"'Everything Happens for a Reason' and Other Things Not to Say to Someone Terminally Ill","datePublished":"2018-02-08T18:53:07.000Z","dateModified":"2018-02-08T21:24:34.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"439373 https://ww2.kqed.org/futureofyou/?p=439373","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/02/08/things-you-dont-say-to-the-terminally-ill/","disqusTitle":"'Everything Happens for a Reason' and Other Things Not to Say to Someone Terminally Ill","source":"KQED Future of You","nprByline":"Rachel Martin\u003cbr />NPR Shots","path":"/futureofyou/439373/things-you-dont-say-to-the-terminally-ill","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Kate Bowler's new memoir, \u003cem>Everything Happens for a Reason And Other Lies I've Loved\u003c/em>, is a funny, intimate portrait of living in that nether space between life and death. In it, she shares her experiences with incurable stage 4 cancer and gives advice on what not to say to those who are terminally ill.\u003c/p>\n\u003caside class=\"alignright\">\n\u003cul>3 things not say to someone terminally ill, from author Kate Bowler...\n\u003cli>'Everything happens for a reason.'\u003c/li>\u003cli>'How are the treatments going?'\n\u003c/li>\u003cli>How are you really?\u003c/li>\u003c/ul>\n\u003c/aside>\n\u003cp>Bowler is also the host of\u003ca href=\"https://www.npr.org/podcasts/583447646/everything-happens\" target=\"_blank\" rel=\"noopener\"> Everything Happens\u003c/a>, a new podcast.\u003c/p>\n\u003cp>She writes that sometimes silence is the best response: \"The truth is that no one knows what to say. It's awkward. Pain is awkward. Tragedy is awkward. People's weird, suffering bodies are awkward. But take the advice of one man, who wrote to me with his policy: Show up and shut up.\"\u003c/p>\n\u003cp>\u003cstrong>Interview Highlights\u003c/strong>\u003c/p>\n\u003cp>\u003cstrong>On why she wrote Everything Happens For A Reason\u003c/strong>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Suddenly at [age] 35, I get this stage 4 cancer diagnosis, and it's just like a bomb went off and everything around me is debris. And I'm thinking, \"Oh my gosh, did I actually maybe expect that everything was going to work out for me?\" And so I wrote the book more like a theological excavation project, like I was just trying to get down to the studs of what I really expected from my life. And I think I was a lot more sure than I realized ... maybe that I was the architect of my own life, that I could overcome anything with a little pluck and determination.\u003c/p>\n\u003cp>\u003cstrong>On how a cancer diagnosis changed her outlook on life\u003c/strong>\u003c/p>\n\u003cp>I kind of pictured my life like it was this life enhancement project, and like my life is like a bucket and I'm supposed to put all the things in the bucket. And the whole purpose is to figure out how to have as many good things coexisting at the same time.And then when everything falls apart, you totally have to switch imagination, like maybe instead, life is just vine to vine. And you're like grabbing onto something, and you're just hoping for dear life it doesn't break.\u003c/p>\n\u003cp>\u003cstrong>On how that diagnosis affected her relationship to friends and family\u003c/strong>\u003c/p>\n\u003cp>I went from feeling like a normal person to all of a sudden, like this spaghetti bowl of cancer. I was trying to learn how to give up really quickly, like looking at my beautiful husband and just immediately all the stuff you're supposed to say, which is just like, \"I have loved you forever,\" and \"All I want for you is love.\"\u003c/p>\n\u003cp>... You have these impossible thoughts like, \"You will live without me,\" and \"Please take care of our kid.\" And like you're trying to do all that hard work and then in the same moment, they're trying to rush in and say, \"We're going to fight this.\" There's all these plans they want to pour their certainty in, to remake the foundation. And there's this, kind of, almost terrible exchange, where you're trying to remake the world as it was. But it's all come apart.\u003c/p>\n\u003cp>\u003cstrong>On whether she has had conversations with her 4-year-old son about death\u003c/strong>\u003c/p>\n\u003cp>He is entirely impervious to all of this, in the best way. But I do think the thing that has radically changed is I really was, before, trying to create this little bubble around him and us, 'cause I thought, like, \"It's my job to protect you,\" and then I realized that I would be the worst thing that happened to him if this went badly.\u003c/p>\n\u003cp>So then I thought like, \"OK, parenting strategy change.\" And I thought, 'Well, if I can just teach you that there is still beauty in others in the midst of pain, then like, that's my job.\" So we work a lot on like, \"How are you feeling?\" like, \"I feel frustrated.\" And then getting him to notice the feelings of others.\u003c/p>\n\u003cp>\u003cstrong>On how she has learned to cope with negative news about her diagnosis\u003c/strong>\u003c/p>\n\u003cp>Well I have rules for when things are too sad, 'cause sometimes, just the reality of things really feels like an avalanche, and it's just going to sweep everything away. So I do make rules for the day, like don't talk about sad things after 9 p.m., so I try to make my day a little gentler. I try to make other people's day a little gentler. The other thing I do is I try really stupid stuff, like I got terrible news a couple months ago, which thankfully turned out to be a medical error.\u003c/p>\n\u003cp>It was a scan and it looked brutal, but I spent that week thinking like, \"This is my last year for sure.\" And it was weird because the next day, I turned to a friend and I said, \"Would you like to go visit the world's largest Ukrainian sausage?\" And he was like, \"Oh, I'm in.\"\u003c/p>\n\u003cp>\u003cstrong>On her list of things not to say to someone with terminal cancer, including \"How are the treatments going and how are you really?\" [book excerpt]\u003c/strong>\u003c/p>\n\u003cp>This is the toughest one of all. I can hear you trying to be in my world and be on my side. But picture the worst thing that's ever happened to you. Got it? Now try to put it in a sentence. Now say it aloud 50 times a day. Does your head hurt? Do you feel sad? Me too. So let's just see if I want to talk about it today, because sometimes I do and sometimes I want a hug and a recap of American Ninja Warrior.\u003c/p>\n\u003cp>\u003cem>Jeffrey Pierre and Miranda Kennedy produced and edited this interview for broadcast. Sydnee Monday and April Fulton adapted it for the Web.\u003c/em>\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Copyright 2018 NPR. To see more, visit \u003ca href=\"http://www.npr.org/\" target=\"_blank\" rel=\"noopener\">http://www.npr.org/\u003c/a>.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/439373/things-you-dont-say-to-the-terminally-ill","authors":["byline_futureofyou_439373"],"categories":["futureofyou_452","futureofyou_1","futureofyou_73"],"tags":["futureofyou_141","futureofyou_61","futureofyou_173","futureofyou_23"],"collections":["futureofyou_1093"],"featImg":"futureofyou_439378","label":"source_futureofyou_439373"},"futureofyou_439223":{"type":"posts","id":"futureofyou_439223","meta":{"index":"posts_1591205157","site":"futureofyou","id":"439223","score":null,"sort":[1518028224000]},"guestAuthors":[],"slug":"migraine-injections-may-finally-offer-relief-for-sufferers","title":"Migraine Injections May Finally Offer Relief For Sufferers","publishDate":1518028224,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>Humans have suffered from migraines for millennia. Yet, despite decades of research, there isn't a drug on the market today that prevents them by targeting the underlying cause. All of that could change in a few months when the FDA is expected to announce its decision about new therapies that have the potential to turn migraine treatment on its head.\u003c/p>\n\u003cp>The new therapies are based on research begun in the 1980s showing that people in the throes of a migraine attack have high levels of a protein called calcitonin gene–related peptide (CGRP) in their blood.\u003c/p>\n\u003cp>[contextly_sidebar id=\"ECfTe7PnuepSCIujv8538j2RQRMlQ2J6\"]Step by step, researchers tracked and studied this neurochemical's effects. They found that \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/11993614\" target=\"_blank\" rel=\"noopener\">injecting\u003c/a> the peptide into the blood of people prone to migraines triggers migraine-like headaches, whereas people not prone to migraines experienced, at most, mild pain. Blocking transmission of\u003ca href=\"http://onlinelibrary.wiley.com/doi/10.1111/bcp.12686/pdf\" target=\"_blank\" rel=\"noopener\"> CGRP in mice\u003c/a> appeared to prevent migraine-like symptoms. And so a few companies started developing a pill that might do the same in humans.\u003c/p>\n\u003cp>Clinical trials of the first pills were effective against migraine but halted in 2011 over concerns about potential liver damage. So, four pharmaceutical companies rejiggered their approach. To bypass the liver, all four instead looked to an injectable therapy called monoclonal antibodies — tiny immune molecules most commonly used to treat cancer. Not only do these bypass the liver to block CGRP, but one injection appears to be effective for up to three months with almost no noticeable side effects.\u003c/p>\n\u003cp>Two manufacturers, Amgen (in collaboration with Novartis) and Teva Pharmaceuticals, have completed clinical trials and expect to hear from the FDA by June whether the therapies have been approved. Two more companies, Eli Lilly and Alder Biopharmaceuticals, plan to file for FDA approval later this year.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003cstrong>Current treatments don't always work\u003c/strong>\u003c/p>\n\u003cp>It's been a long time coming. Right now, the only available preventive treatments are accidental discoveries: A number of people prescribed medications for depression, high blood pressure and epilepsy discovered migraine relief, too. Now, many of those drugs, including propranolol and topiramate, have been tested and approved for migraine. But no one drug works for everyone, and side effects can prove intolerable or downright unpleasant.\u003c/p>\n\u003cp>Migraines are throbbing, one-sided headaches that can be accompanied by nausea as well as sensitivity to light, sound, smell, and movement. At their best, the headaches are an annoyance. At their worst, they can be completely debilitating. So for those of us who get numerous migraines each month, the prospect of a new approach feels almost life-changing.\u003c/p>\n\u003caside class=\"pullquote aligncenter\">“By age 25, I started to wonder if there was something seriously wrong with my head.”\u003ccite>Lauren Gravitz\u003c/cite>\u003c/aside>\n\u003cp>According to \u003ca href=\"https://www.cdc.gov/mmwr/volumes/66/wr/mm6624a8.htm\" target=\"_blank\" rel=\"noopener\">one recent survey\u003c/a> by the Centers for Disease Control and Prevention, about 10 percent of men and 20 percent of women in the U.S. reported having had a migraine in the last three months. And \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/21063918?dopt=Abstract\" target=\"_blank\" rel=\"noopener\">up to two percent\u003c/a> of all Americans has at least 15 migraine days every single month. The toll such pain can take on health, morale, and productivity is substantial.\u003c/p>\n\u003cp>My own migraines started when I was 13. They struck a few times a week and I thought \u003ca href=\"https://americanmigrainefoundation.org/understanding-migraine/identifying-treating-migraine/\" target=\"_blank\" rel=\"noopener\">they were normal headaches\u003c/a>. For a while, I tried the usual over the counter pain relievers but, one by one, they stopped working. By age 25, I started to wonder if there was something seriously wrong with my head. My general practitioner diagnosed me with migraines, gave me my first preventive medication — an antidepressant — then sent me to see a specialist.\u003c/p>\n\u003cp>Since that day more than 17 years ago, I have tried six preventive prescription medications. Not one helped. I alternated among four different, neurologist-recommended supplements, all to no avail. I received bi-monthly injections of magnesium and participated in one of the first clinical trials of Botox. And while Botox seemed to decrease my migraines by one or two per month, it wasn't enough to bother fighting about it with a new insurance company. I exercised regularly. I experimented with an elimination diet that left me eating nothing but broccoli and white rice, but still the migraines came. I averaged about 15 to 20 each month.\u003c/p>\n\u003cp>Still, I considered myself lucky. The headaches almost never came with nausea, and I had medications that typically ousted them within an hour or two. All told, I usually lost only a few hours of productivity a week.\u003c/p>\n\u003cp>When I grew older and had two children, my body changed and my migraines changed, too. I get them less frequently now, but when they come, they can stick around for a few days or even a week. Abortive medications still work, except when they don't. So when I heard about a new approach that was making its way through a number of pharmaceutical company pipelines, I began combing through the \u003ca href=\"http://www.clinicaltrials.gov\" target=\"_blank\" rel=\"noopener\">national clinical trials database\u003c/a> to find a trial near me. I found one about 80 miles away, which didn't seem too far a trek considering the tantalizing reward of a migraine-free life. I made an appointment.\u003c/p>\n\u003cp>\u003cstrong>Clinical trials seem promising\u003c/strong>\u003c/p>\n\u003cp>\u003ca href=\"https://www.mayoclinic.org/biographies/dodick-david-w-m-d/bio-20053142\" target=\"_blank\" rel=\"noopener\">David Dodick\u003c/a>, a neurologist at the Mayo Clinic in Phoenix, Ariz., has been involved in multiple clinical trials with each of the four anti-CGRP antibody treatments in development. And, he admits, he's optimistic. He has good reason to be: Each of the therapies decreases migraine frequency by at least one to two days per month. \"In a field where, over time, the progress and pace of research in understanding the underlying biology and mechanism of disease has been slow, this was very exciting,\" he says.\u003c/p>\n\u003cp>Because migraines are not life-threatening, most drugs have to pass a pretty high bar to be approved. And so far, patients on the experimental treatments report limited side effects that consist mostly of \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5383797/\" target=\"_blank\" rel=\"noopener\">pain at the injection site\u003c/a>. Unlike the current preventive medications, there is no nausea, no fuzzy thinking, no nerve pain, no weight loss or gain. And instead of remembering to take a daily pill, there is just a once-monthly injection.\u003c/p>\n\u003cp>Neurologists already have patients eager to test these therapies, especially when everything else they've tried hasn't worked. \"There's a big hole to fill, both in prevention and acute therapies,\" says \u003ca href=\"https://nyheadache.com/staff/alexander-mauskop/\" target=\"_blank\" rel=\"noopener\">Alexander Mauskop\u003c/a>, director of the New York Headache Center in New York City. (Full disclosure: He's my former neurologist.) \"If I have someone who's really suffering and can't find a solution, I tell them that in June I might have something new for them to try.\" Right now, he says, he has a list of about two dozen such patients.\u003c/p>\n\u003cp>\u003cstrong>High price tag\u003c/strong>\u003c/p>\n\u003cp>Even if the new therapies are approved, however, patients may still have to jump through a number of hoops to get them. Biologic therapies like these are expensive, and treatment could \u003ca href=\"https://www.theverge.com/2016/5/24/11712554/migraine-drug-treatment-headache-cost-pharmaceutical-health-insurance\" target=\"_blank\" rel=\"noopener\">reportedly range\u003c/a> anywhere from $8,000 to $18,000 a year. At that price, Mauskop and other neurologists expect insurance companies to require patients to have tried just about everything else first.\u003c/p>\n\u003cp>The other hitch at this stage is a lack of long-term safety data. \"If someone is well-controlled with Botox or another drug, I'd not suggest they switch,\" Mauskop says. \"With Vioxx, it took 10 years before they discovered that it increased the risk of heart problems.\"\u003c/p>\n\u003cp>Side effects are a potential concern. \u003ca href=\"https://physiciandirectory.brighamandwomens.org/Details/124\" target=\"_blank\" rel=\"noopener\">Elizabeth Loder\u003c/a>, chief of headache at Brigham and Women's Hospital in Boston, points out that because CGRP constricts blood vessels, there may be potential long-term effects on blood pressure or other cardiovascular function. In women of childbearing age, who are the ones most prone to frequent migraines, \"you can imagine that might have effects on fertility or placental function.\"\u003c/p>\n\u003cp>Right now, the longest patients have been on one of these new therapies is one to two years.\u003c/p>\n\u003cp>I ask Mauskop whether he'd recommend I enroll in a clinical trial, given my failure to respond to most everything else. He pauses, noting that he's no longer my neurologist and that he can't really give me any suggestions. But then he says that, since I'd previously shown some response to Botox, perhaps I might want to give it another try. I think about my two young children and my risk tolerance. Perhaps in ten years I'll feel differently. For now, however, I pick up the phone and cancel my clinical trial appointment.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>Lauren Gravitz is a science writer and editor in Hershey, Penn. Her work has appeared in \u003c/em>Nature\u003cem>, \u003c/em>The Economist\u003cem>, \u003c/em>Aeon\u003cem>, \u003c/em>Discover\u003cem>, \u003c/em>The Oprah Magazine\u003cem>, and more. Find her at \u003ca href=\"http://www.laurengravitz.com\" target=\"_blank\" rel=\"noopener\">www.laurengravitz.com\u003c/a> and \u003ca href=\"https://twitter.com/lyrebard\">@lyrebard\u003c/a>.\u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit \u003ca href=\"http://www.npr.org/\" target=\"_blank\" rel=\"noopener\">http://www.npr.org/\u003c/a>.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Gone+With+A+Shot%3F+Hopeful+New+Signs+Of+Relief+For+Migraine+Sufferers&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n","blocks":[],"excerpt":"Novel migraine therapies could change how physicians treat these debilitating headaches. But they are likely to be expensive and the long-term side effects will not be known for some time.","status":"publish","parent":0,"modified":1518039302,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":26,"wordCount":1459},"headData":{"title":"Migraine Injections May Finally Offer Relief For Sufferers | KQED","description":"Novel migraine therapies could change how physicians treat these debilitating headaches. But they are likely to be expensive and the long-term side effects will not be known for some time.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Migraine Injections May Finally Offer Relief For Sufferers","datePublished":"2018-02-07T18:30:24.000Z","dateModified":"2018-02-07T21:35:02.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"439223 https://ww2.kqed.org/futureofyou/?p=439223","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/02/07/migraine-injections-may-finally-offer-relief-for-sufferers/","disqusTitle":"Migraine Injections May Finally Offer Relief For Sufferers","nprImageCredit":"Photographer is my life","nprByline":"Lauren Gravitz\u003cbr />NPR Shots","nprImageAgency":"Getty Images","nprStoryId":"581092093","nprApiLink":"http://api.npr.org/query?id=581092093&apiKey=MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004","nprHtmlLink":"https://www.npr.org/sections/health-shots/2018/02/03/581092093/gone-with-a-shot-hopeful-new-signs-of-relief-for-migraine-sufferers?ft=nprml&f=581092093","nprRetrievedStory":"1","nprPubDate":"Sat, 03 Feb 2018 08:00:00 -0500","nprStoryDate":"Sat, 03 Feb 2018 08:00:21 -0500","nprLastModifiedDate":"Sat, 03 Feb 2018 08:00:21 -0500","path":"/futureofyou/439223/migraine-injections-may-finally-offer-relief-for-sufferers","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Humans have suffered from migraines for millennia. Yet, despite decades of research, there isn't a drug on the market today that prevents them by targeting the underlying cause. All of that could change in a few months when the FDA is expected to announce its decision about new therapies that have the potential to turn migraine treatment on its head.\u003c/p>\n\u003cp>The new therapies are based on research begun in the 1980s showing that people in the throes of a migraine attack have high levels of a protein called calcitonin gene–related peptide (CGRP) in their blood.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>Step by step, researchers tracked and studied this neurochemical's effects. They found that \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/11993614\" target=\"_blank\" rel=\"noopener\">injecting\u003c/a> the peptide into the blood of people prone to migraines triggers migraine-like headaches, whereas people not prone to migraines experienced, at most, mild pain. Blocking transmission of\u003ca href=\"http://onlinelibrary.wiley.com/doi/10.1111/bcp.12686/pdf\" target=\"_blank\" rel=\"noopener\"> CGRP in mice\u003c/a> appeared to prevent migraine-like symptoms. And so a few companies started developing a pill that might do the same in humans.\u003c/p>\n\u003cp>Clinical trials of the first pills were effective against migraine but halted in 2011 over concerns about potential liver damage. So, four pharmaceutical companies rejiggered their approach. To bypass the liver, all four instead looked to an injectable therapy called monoclonal antibodies — tiny immune molecules most commonly used to treat cancer. Not only do these bypass the liver to block CGRP, but one injection appears to be effective for up to three months with almost no noticeable side effects.\u003c/p>\n\u003cp>Two manufacturers, Amgen (in collaboration with Novartis) and Teva Pharmaceuticals, have completed clinical trials and expect to hear from the FDA by June whether the therapies have been approved. Two more companies, Eli Lilly and Alder Biopharmaceuticals, plan to file for FDA approval later this year.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cstrong>Current treatments don't always work\u003c/strong>\u003c/p>\n\u003cp>It's been a long time coming. Right now, the only available preventive treatments are accidental discoveries: A number of people prescribed medications for depression, high blood pressure and epilepsy discovered migraine relief, too. Now, many of those drugs, including propranolol and topiramate, have been tested and approved for migraine. But no one drug works for everyone, and side effects can prove intolerable or downright unpleasant.\u003c/p>\n\u003cp>Migraines are throbbing, one-sided headaches that can be accompanied by nausea as well as sensitivity to light, sound, smell, and movement. At their best, the headaches are an annoyance. At their worst, they can be completely debilitating. So for those of us who get numerous migraines each month, the prospect of a new approach feels almost life-changing.\u003c/p>\n\u003caside class=\"pullquote aligncenter\">“By age 25, I started to wonder if there was something seriously wrong with my head.”\u003ccite>Lauren Gravitz\u003c/cite>\u003c/aside>\n\u003cp>According to \u003ca href=\"https://www.cdc.gov/mmwr/volumes/66/wr/mm6624a8.htm\" target=\"_blank\" rel=\"noopener\">one recent survey\u003c/a> by the Centers for Disease Control and Prevention, about 10 percent of men and 20 percent of women in the U.S. reported having had a migraine in the last three months. And \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/21063918?dopt=Abstract\" target=\"_blank\" rel=\"noopener\">up to two percent\u003c/a> of all Americans has at least 15 migraine days every single month. The toll such pain can take on health, morale, and productivity is substantial.\u003c/p>\n\u003cp>My own migraines started when I was 13. They struck a few times a week and I thought \u003ca href=\"https://americanmigrainefoundation.org/understanding-migraine/identifying-treating-migraine/\" target=\"_blank\" rel=\"noopener\">they were normal headaches\u003c/a>. For a while, I tried the usual over the counter pain relievers but, one by one, they stopped working. By age 25, I started to wonder if there was something seriously wrong with my head. My general practitioner diagnosed me with migraines, gave me my first preventive medication — an antidepressant — then sent me to see a specialist.\u003c/p>\n\u003cp>Since that day more than 17 years ago, I have tried six preventive prescription medications. Not one helped. I alternated among four different, neurologist-recommended supplements, all to no avail. I received bi-monthly injections of magnesium and participated in one of the first clinical trials of Botox. And while Botox seemed to decrease my migraines by one or two per month, it wasn't enough to bother fighting about it with a new insurance company. I exercised regularly. I experimented with an elimination diet that left me eating nothing but broccoli and white rice, but still the migraines came. I averaged about 15 to 20 each month.\u003c/p>\n\u003cp>Still, I considered myself lucky. The headaches almost never came with nausea, and I had medications that typically ousted them within an hour or two. All told, I usually lost only a few hours of productivity a week.\u003c/p>\n\u003cp>When I grew older and had two children, my body changed and my migraines changed, too. I get them less frequently now, but when they come, they can stick around for a few days or even a week. Abortive medications still work, except when they don't. So when I heard about a new approach that was making its way through a number of pharmaceutical company pipelines, I began combing through the \u003ca href=\"http://www.clinicaltrials.gov\" target=\"_blank\" rel=\"noopener\">national clinical trials database\u003c/a> to find a trial near me. I found one about 80 miles away, which didn't seem too far a trek considering the tantalizing reward of a migraine-free life. I made an appointment.\u003c/p>\n\u003cp>\u003cstrong>Clinical trials seem promising\u003c/strong>\u003c/p>\n\u003cp>\u003ca href=\"https://www.mayoclinic.org/biographies/dodick-david-w-m-d/bio-20053142\" target=\"_blank\" rel=\"noopener\">David Dodick\u003c/a>, a neurologist at the Mayo Clinic in Phoenix, Ariz., has been involved in multiple clinical trials with each of the four anti-CGRP antibody treatments in development. And, he admits, he's optimistic. He has good reason to be: Each of the therapies decreases migraine frequency by at least one to two days per month. \"In a field where, over time, the progress and pace of research in understanding the underlying biology and mechanism of disease has been slow, this was very exciting,\" he says.\u003c/p>\n\u003cp>Because migraines are not life-threatening, most drugs have to pass a pretty high bar to be approved. And so far, patients on the experimental treatments report limited side effects that consist mostly of \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5383797/\" target=\"_blank\" rel=\"noopener\">pain at the injection site\u003c/a>. Unlike the current preventive medications, there is no nausea, no fuzzy thinking, no nerve pain, no weight loss or gain. And instead of remembering to take a daily pill, there is just a once-monthly injection.\u003c/p>\n\u003cp>Neurologists already have patients eager to test these therapies, especially when everything else they've tried hasn't worked. \"There's a big hole to fill, both in prevention and acute therapies,\" says \u003ca href=\"https://nyheadache.com/staff/alexander-mauskop/\" target=\"_blank\" rel=\"noopener\">Alexander Mauskop\u003c/a>, director of the New York Headache Center in New York City. (Full disclosure: He's my former neurologist.) \"If I have someone who's really suffering and can't find a solution, I tell them that in June I might have something new for them to try.\" Right now, he says, he has a list of about two dozen such patients.\u003c/p>\n\u003cp>\u003cstrong>High price tag\u003c/strong>\u003c/p>\n\u003cp>Even if the new therapies are approved, however, patients may still have to jump through a number of hoops to get them. Biologic therapies like these are expensive, and treatment could \u003ca href=\"https://www.theverge.com/2016/5/24/11712554/migraine-drug-treatment-headache-cost-pharmaceutical-health-insurance\" target=\"_blank\" rel=\"noopener\">reportedly range\u003c/a> anywhere from $8,000 to $18,000 a year. At that price, Mauskop and other neurologists expect insurance companies to require patients to have tried just about everything else first.\u003c/p>\n\u003cp>The other hitch at this stage is a lack of long-term safety data. \"If someone is well-controlled with Botox or another drug, I'd not suggest they switch,\" Mauskop says. \"With Vioxx, it took 10 years before they discovered that it increased the risk of heart problems.\"\u003c/p>\n\u003cp>Side effects are a potential concern. \u003ca href=\"https://physiciandirectory.brighamandwomens.org/Details/124\" target=\"_blank\" rel=\"noopener\">Elizabeth Loder\u003c/a>, chief of headache at Brigham and Women's Hospital in Boston, points out that because CGRP constricts blood vessels, there may be potential long-term effects on blood pressure or other cardiovascular function. In women of childbearing age, who are the ones most prone to frequent migraines, \"you can imagine that might have effects on fertility or placental function.\"\u003c/p>\n\u003cp>Right now, the longest patients have been on one of these new therapies is one to two years.\u003c/p>\n\u003cp>I ask Mauskop whether he'd recommend I enroll in a clinical trial, given my failure to respond to most everything else. He pauses, noting that he's no longer my neurologist and that he can't really give me any suggestions. But then he says that, since I'd previously shown some response to Botox, perhaps I might want to give it another try. I think about my two young children and my risk tolerance. Perhaps in ten years I'll feel differently. For now, however, I pick up the phone and cancel my clinical trial appointment.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>Lauren Gravitz is a science writer and editor in Hershey, Penn. Her work has appeared in \u003c/em>Nature\u003cem>, \u003c/em>The Economist\u003cem>, \u003c/em>Aeon\u003cem>, \u003c/em>Discover\u003cem>, \u003c/em>The Oprah Magazine\u003cem>, and more. Find her at \u003ca href=\"http://www.laurengravitz.com\" target=\"_blank\" rel=\"noopener\">www.laurengravitz.com\u003c/a> and \u003ca href=\"https://twitter.com/lyrebard\">@lyrebard\u003c/a>.\u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit \u003ca href=\"http://www.npr.org/\" target=\"_blank\" rel=\"noopener\">http://www.npr.org/\u003c/a>.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Gone+With+A+Shot%3F+Hopeful+New+Signs+Of+Relief+For+Migraine+Sufferers&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/439223/migraine-injections-may-finally-offer-relief-for-sufferers","authors":["byline_futureofyou_439223"],"categories":["futureofyou_1060","futureofyou_1"],"tags":["futureofyou_61","futureofyou_173","futureofyou_1407","futureofyou_271","futureofyou_812"],"featImg":"futureofyou_439224","label":"futureofyou"},"futureofyou_11960":{"type":"posts","id":"futureofyou_11960","meta":{"index":"posts_1591205157","site":"futureofyou","id":"11960","score":null,"sort":[1437152075000]},"guestAuthors":[],"slug":"increasingly-young-bay-area-doctors-leave-medicine-for-digital-health","title":"Bay Area Doctors Quit Medicine to Work for Digital Health Startups","publishDate":1437152075,"format":"image","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>Even as a young child, Amanda Angelotti dreamed about becoming a doctor. Five years after graduating from college, she enrolled in the University of California, San Francisco medical school.\u003c/p>\n\u003cp>But by her third year, Angelotti couldn't shake the feeling that something was missing. During a routine shift at the hospital, making rounds with her fellow students, Angelotti said her thoughts kept drifting.\u003c/p>\n\u003cp>\"I was supposed to be focused on the patient's vital signs and presenting a summary, but I was consumed with thoughts about how to improve the process of rounds,\" she said. Most striking was the patient's absence from the discussion. \"I kept asking myself, 'how could we change things to involve the patient more?'\"\u003c/p>\n\u003cp>Just a stone's throw from UCSF Medical Center, a small group of entrepreneurs at \u003ca href=\"http://rockhealth.com\">Rock Health, \u003c/a>a new accelerator program (and now a venture firm), were thinking about how to shake up the health care process with technology. These startups were developing new wearable devices and mobile apps to help patients take more control of their own health.\u003c/p>\n\u003cfigure id=\"attachment_12284\" class=\"wp-caption alignright\" style=\"max-width: 407px\">\u003cimg class=\" wp-image-12284\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/07/JV0A7413-800x533.jpg\" alt=\"Amanda Angelotti and Connie Chen developed a passion for digital health while at medical school \" width=\"407\" height=\"272\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/07/JV0A7413-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/JV0A7413-400x267.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/JV0A7413-1180x787.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/JV0A7413-960x640.jpg 960w\" sizes=\"(max-width: 407px) 100vw, 407px\">\u003cfigcaption class=\"wp-caption-text\">Amanda Angelotti and Connie Chen developed a passion for digital health during medical school \u003ccite>(Josh Cassidy, KQED )\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The timing was right to bring new ideas to the sector. By 2012, hospitals around the country were rapidly moving away from paper-based medical records to electronic systems, a first step to moving health care into the digital age.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Angelotti graduated the following year, but she did not apply for any residency programs at U.S. hospitals. Instead, she applied to work at Rock Health as a researcher and writer before joining the new medical review site \u003ca href=\"http://www.iodine.com/\">Iodine\u003c/a>, one of an exploding number of digital health startups in San Francisco.\u003c/p>\n\u003cp>By the end of that year, Rock Health projected that digital health funding had exceeded $1.9 billion, a 39 percent jump from the prior year.\u003c/p>\n\u003cp>\u003cstrong>The Rising Tide of Doctors Turning to Entrepreneurship\u003c/strong>\u003c/p>\n\u003cp>Angelotti is far from alone in making the leap from medical school to digital health.\u003c/p>\n\u003cp>Students from around the Bay Area and the country are increasingly dropping out of residency programs and instead going into careers in high-tech start-ups.\u003c/p>\n\u003cp>“We’ve seen that many of these Bay Area-based medical students are drawn to startup opportunities — it used to be biotech, and now it’s more often digital health,” said Jeff Tangney, CEO of Doximity, a physician-network that generates data for the \u003ca href=\"http://health.usnews.com/health-news/blogs/second-opinion/2014/01/10/doximity-begins-surveying-physicians-for-us-news-best-hospitals\">U.S. News Best Hospitals rankings\u003c/a>.\u003c/p>\n\u003cp>Tangney said many of the top digital health companies are more than willing to hire new grads straight out of medical school, who lack years of clinical experience.\u003c/p>\n\u003cp>Dropout doctors are well-positioned, he added, for a career in digital health as they have an insider’s view of the industry — and ideas about how to fix it.\u003c/p>\n\u003cp> \u003c/p>\n\u003cfigure id=\"attachment_13015\" class=\"wp-caption alignright\" style=\"max-width: 437px\">\u003cimg class=\" wp-image-13015\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/07/sean-duffy-800x533.jpg\" alt=\"Harvard Medical School dropout Sean Duffy addressing a group from Kaiser Permanente\" width=\"437\" height=\"291\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/07/sean-duffy-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/sean-duffy-400x267.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/sean-duffy-1180x787.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/sean-duffy-960x640.jpg 960w\" sizes=\"(max-width: 437px) 100vw, 437px\">\u003cfigcaption class=\"wp-caption-text\">Harvard Medical School dropout Sean Duffy addressing a group from Kaiser Permanente \u003ccite>(Omada Health )\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>As Sean Duffy, the CEO of Omada Health and a Harvard medical school dropout put it: \"I wanted to understand what's in the trenches, so I could redefine the trenches.\" Omada Health offers an online program to help people change their behavior and avoid the onset of diabetes.\u003c/p>\n\u003cp>Duffy is part of a private Facebook group called \"dropout doctors,\" which includes some of the biggest names in digital health. It functions as a support group, of sorts, and meets every few months for dinner or drinks. Some members, like Angelotti, said they find solace in the group as it can be difficult and lonely to opt out of clinical medicine and follow a different path.\u003c/p>\n\u003cp>The membership includes Angelotti, who now works at primary care chain One Medical; Duffy, CEO of Omada Health\u003ca href=\"https://omadahealth.com/\">;\u003c/a> Connie Chen, the cofounder of Vida Health; Shaundra Eichstadt, medical director at \u003ca href=\"https://www.grandrounds.com/\">Grand Rounds\u003c/a>; Abhas Gupta, a health-focused venture capitalist with the firm \u003ca href=\"http://www.mdv.com/\">Mohr Davidow\u003c/a>; Molly Maloof, a medical advisor to \u003ca href=\"https://doctorbase.com/\">DoctorBase;\u003c/a> and Rebecca Coelius, the director of health at \u003ca href=\"https://www.codeforamerica.org/\">Code for America\u003c/a>.\u003c/p>\n\u003cp>\u003cb>'I Never Thought I Would Leave Medicine' \u003c/b>\u003c/p>\n\u003cp>Experts say it's both 'push and pull' effect that is motivating young doctors to seek out opportunities with the growing intersection of technology and health care, rather than pursue brick and mortar medicine.\u003c/p>\n\u003cp>Many of the students at the top Bay Area medical schools, Stanford and UCSF, are exposed to entrepreneurial thinking during the course of their education, which can be a major draw.\u003c/p>\n\u003cp>\"I never thought I would leave medicine,\" said Eichstadt, who now works at Grand Rounds Health, a San Francisco-based startup that helps patients access second opinions from top medical experts online. \"But there's such a rich opportunity at companies here.\"\u003c/p>\n\u003cfigure id=\"attachment_13016\" class=\"wp-caption alignright\" style=\"max-width: 410px\">\u003cimg class=\" wp-image-13016\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/07/SE-photo-800x565.jpg\" alt=\"Dr. Shaundra Eichstadt made the transition from medicine to digital health. \" width=\"410\" height=\"289\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/07/SE-photo-800x565.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/SE-photo-400x282.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/SE-photo-1180x833.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/SE-photo-960x678.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/SE-photo.jpg 2048w\" sizes=\"(max-width: 410px) 100vw, 410px\">\u003cfigcaption class=\"wp-caption-text\">Dr. Shaundra Eichstadt made the transition from medicine to digital health. \u003ccite>(Shaundra Eichstadt )\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Eichstadt graduated from Stanford and pursued several years of residency, specializing in plastic and reconstructive surgery.\u003c/p>\n\u003cp>\"I realized that the system isn't designed for doctors to make the real change you would like to for the patient,\" she said. Eichstadt said she believed that she could make a bigger impact elsewhere.\u003c/p>\n\u003cp>Many of the dropout docs expressed a desire to improve the doctor-patient experience. In interviews with \u003cem>KQED,\u003c/em> several said they spent very little time administering care during medical school, and they felt that patients were too often kept out of the loop.\u003c/p>\n\u003cp>A recent study found that doctors-in-training spend\u003ca href=\"http://well.blogs.nytimes.com/2013/05/30/for-new-doctors-8-minutes-per-patient/\"> an average of just eight minutes\u003c/a> with each patient. This is a drastic decrease from previous generations and is linked to more record-keeping requirements and restricted on-duty hours.\u003c/p>\n\u003cp>Connie Chen still practices medicine a half-day each week. But shortly after medical school, Chen co-founded an app called \u003ca href=\"https://www.vida.com\">Vida\u003c/a>, which connects people with chronic diseases to virtual health coaches, like nutritionists and nurses.\u003c/p>\n\u003cp>Chen said she learned very little about nutrition at medical school. But digital health opened up opportunities for Chen to educate herself about wellness, so she can help patients stay healthy.\u003c/p>\n\u003caside class=\"pullquote alignright\">“Tech culture is very appealing when juxtaposed against the hierarchy and myriad hoops to be jumped through in clinical medicine.\"\u003ccite>Rebecca Coelius, Director of Health at Code for America\u003c/cite>\u003c/aside>\n\u003cp>\"Traditional health care is really oriented to make the life of the provider easier,\" she said. \"Your patients cycle in and out of the hospital, and very often, no one makes enough of an effort to communicate with them.\"\u003c/p>\n\u003cp>\u003cstrong>Lack of Opportunities \u003c/strong>\u003c/p>\n\u003cp>Other dropout docs said they felt pushed out of medicine, due to the lack of career opportunities or earning potential. Family practitioners, who serve at the front lines of health care, \u003ca href=\"http://healthland.time.com/2012/04/27/doctors-salaries-who-earns-the-most-and-the-least/\">are paid the least\u003c/a>.\u003c/p>\n\u003cp>Recent studies have also shown rising levels of \u003ca href=\"http://khn.org/news/doctor-burnout/\">discontent among primary care doctors\u003c/a>. Nearly half of 7,200 doctors who responded to a Mayo Clinic survey in 2012 said they felt a lack of enthusiasm about medicine or cynicism about it. A decade ago, one quarter of doctors reported feeling burnt out.\u003c/p>\n\u003cp>\"I loved working with patients but I looked around me and realized that I didn't want the jobs of anybody who had 'succeeded' as a clinician,\" said Rebecca Coelius, who graduated with an MD from UCSF.\u003c/p>\n\u003cp>Coelius now advises a number of health-tech startups, including Doximity and previously worked for \u003ca href=\"http://healthloop.com/\">HealthLoop\u003c/a>, which was founded by another entrepreneurial MD, Dr. Jordan Shlain. She's also worked for the government as a medical innovation officer.\u003c/p>\n\u003cp>\"Tech culture is very appealing when juxtaposed against the hierarchy and myriad hoops to be jumped through in clinical medicine,\" she explained.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>Correction: An earlier version of this article contained data from Doximity on the percentage of Stanford and UCSF medical students applying to residency programs. Doximity says it failed to factor in medical school graduates who pursue further post-graduate studies and that the Stanford information it provided was inaccurate. Stanford officials say Stanford has a 95 percent rate of medical students pursuing residency after graduation.\u003c/em>\u003c/p>\n\n","blocks":[],"excerpt":"KQED reports on the growing trend of Bay Area-based doctors making the leap from traditional medicine to digital health. These \"dropout doctors\" say they can make a bigger impact by transforming health care from the outside in, rather than the inside out. ","status":"publish","parent":0,"modified":1437787112,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":36,"wordCount":1385},"headData":{"title":"Bay Area Doctors Quit Medicine to Work for Digital Health Startups | KQED","description":"KQED reports on the growing trend of Bay Area-based doctors making the leap from traditional medicine to digital health. These "dropout doctors" say they can make a bigger impact by transforming health care from the outside in, rather than the inside out. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Bay Area Doctors Quit Medicine to Work for Digital Health Startups","datePublished":"2015-07-17T16:54:35.000Z","dateModified":"2015-07-25T01:18:32.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"11960 http://ww2.kqed.org/futureofyou/?p=11960","disqusUrl":"https://ww2.kqed.org/futureofyou/2015/07/17/increasingly-young-bay-area-doctors-leave-medicine-for-digital-health/","disqusTitle":"Bay Area Doctors Quit Medicine to Work for Digital Health Startups","path":"/futureofyou/11960/increasingly-young-bay-area-doctors-leave-medicine-for-digital-health","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Even as a young child, Amanda Angelotti dreamed about becoming a doctor. Five years after graduating from college, she enrolled in the University of California, San Francisco medical school.\u003c/p>\n\u003cp>But by her third year, Angelotti couldn't shake the feeling that something was missing. During a routine shift at the hospital, making rounds with her fellow students, Angelotti said her thoughts kept drifting.\u003c/p>\n\u003cp>\"I was supposed to be focused on the patient's vital signs and presenting a summary, but I was consumed with thoughts about how to improve the process of rounds,\" she said. Most striking was the patient's absence from the discussion. \"I kept asking myself, 'how could we change things to involve the patient more?'\"\u003c/p>\n\u003cp>Just a stone's throw from UCSF Medical Center, a small group of entrepreneurs at \u003ca href=\"http://rockhealth.com\">Rock Health, \u003c/a>a new accelerator program (and now a venture firm), were thinking about how to shake up the health care process with technology. These startups were developing new wearable devices and mobile apps to help patients take more control of their own health.\u003c/p>\n\u003cfigure id=\"attachment_12284\" class=\"wp-caption alignright\" style=\"max-width: 407px\">\u003cimg class=\" wp-image-12284\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/07/JV0A7413-800x533.jpg\" alt=\"Amanda Angelotti and Connie Chen developed a passion for digital health while at medical school \" width=\"407\" height=\"272\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/07/JV0A7413-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/JV0A7413-400x267.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/JV0A7413-1180x787.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/JV0A7413-960x640.jpg 960w\" sizes=\"(max-width: 407px) 100vw, 407px\">\u003cfigcaption class=\"wp-caption-text\">Amanda Angelotti and Connie Chen developed a passion for digital health during medical school \u003ccite>(Josh Cassidy, KQED )\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The timing was right to bring new ideas to the sector. By 2012, hospitals around the country were rapidly moving away from paper-based medical records to electronic systems, a first step to moving health care into the digital age.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Angelotti graduated the following year, but she did not apply for any residency programs at U.S. hospitals. Instead, she applied to work at Rock Health as a researcher and writer before joining the new medical review site \u003ca href=\"http://www.iodine.com/\">Iodine\u003c/a>, one of an exploding number of digital health startups in San Francisco.\u003c/p>\n\u003cp>By the end of that year, Rock Health projected that digital health funding had exceeded $1.9 billion, a 39 percent jump from the prior year.\u003c/p>\n\u003cp>\u003cstrong>The Rising Tide of Doctors Turning to Entrepreneurship\u003c/strong>\u003c/p>\n\u003cp>Angelotti is far from alone in making the leap from medical school to digital health.\u003c/p>\n\u003cp>Students from around the Bay Area and the country are increasingly dropping out of residency programs and instead going into careers in high-tech start-ups.\u003c/p>\n\u003cp>“We’ve seen that many of these Bay Area-based medical students are drawn to startup opportunities — it used to be biotech, and now it’s more often digital health,” said Jeff Tangney, CEO of Doximity, a physician-network that generates data for the \u003ca href=\"http://health.usnews.com/health-news/blogs/second-opinion/2014/01/10/doximity-begins-surveying-physicians-for-us-news-best-hospitals\">U.S. News Best Hospitals rankings\u003c/a>.\u003c/p>\n\u003cp>Tangney said many of the top digital health companies are more than willing to hire new grads straight out of medical school, who lack years of clinical experience.\u003c/p>\n\u003cp>Dropout doctors are well-positioned, he added, for a career in digital health as they have an insider’s view of the industry — and ideas about how to fix it.\u003c/p>\n\u003cp> \u003c/p>\n\u003cfigure id=\"attachment_13015\" class=\"wp-caption alignright\" style=\"max-width: 437px\">\u003cimg class=\" wp-image-13015\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/07/sean-duffy-800x533.jpg\" alt=\"Harvard Medical School dropout Sean Duffy addressing a group from Kaiser Permanente\" width=\"437\" height=\"291\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/07/sean-duffy-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/sean-duffy-400x267.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/sean-duffy-1180x787.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/sean-duffy-960x640.jpg 960w\" sizes=\"(max-width: 437px) 100vw, 437px\">\u003cfigcaption class=\"wp-caption-text\">Harvard Medical School dropout Sean Duffy addressing a group from Kaiser Permanente \u003ccite>(Omada Health )\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>As Sean Duffy, the CEO of Omada Health and a Harvard medical school dropout put it: \"I wanted to understand what's in the trenches, so I could redefine the trenches.\" Omada Health offers an online program to help people change their behavior and avoid the onset of diabetes.\u003c/p>\n\u003cp>Duffy is part of a private Facebook group called \"dropout doctors,\" which includes some of the biggest names in digital health. It functions as a support group, of sorts, and meets every few months for dinner or drinks. Some members, like Angelotti, said they find solace in the group as it can be difficult and lonely to opt out of clinical medicine and follow a different path.\u003c/p>\n\u003cp>The membership includes Angelotti, who now works at primary care chain One Medical; Duffy, CEO of Omada Health\u003ca href=\"https://omadahealth.com/\">;\u003c/a> Connie Chen, the cofounder of Vida Health; Shaundra Eichstadt, medical director at \u003ca href=\"https://www.grandrounds.com/\">Grand Rounds\u003c/a>; Abhas Gupta, a health-focused venture capitalist with the firm \u003ca href=\"http://www.mdv.com/\">Mohr Davidow\u003c/a>; Molly Maloof, a medical advisor to \u003ca href=\"https://doctorbase.com/\">DoctorBase;\u003c/a> and Rebecca Coelius, the director of health at \u003ca href=\"https://www.codeforamerica.org/\">Code for America\u003c/a>.\u003c/p>\n\u003cp>\u003cb>'I Never Thought I Would Leave Medicine' \u003c/b>\u003c/p>\n\u003cp>Experts say it's both 'push and pull' effect that is motivating young doctors to seek out opportunities with the growing intersection of technology and health care, rather than pursue brick and mortar medicine.\u003c/p>\n\u003cp>Many of the students at the top Bay Area medical schools, Stanford and UCSF, are exposed to entrepreneurial thinking during the course of their education, which can be a major draw.\u003c/p>\n\u003cp>\"I never thought I would leave medicine,\" said Eichstadt, who now works at Grand Rounds Health, a San Francisco-based startup that helps patients access second opinions from top medical experts online. \"But there's such a rich opportunity at companies here.\"\u003c/p>\n\u003cfigure id=\"attachment_13016\" class=\"wp-caption alignright\" style=\"max-width: 410px\">\u003cimg class=\" wp-image-13016\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/07/SE-photo-800x565.jpg\" alt=\"Dr. Shaundra Eichstadt made the transition from medicine to digital health. \" width=\"410\" height=\"289\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/07/SE-photo-800x565.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/SE-photo-400x282.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/SE-photo-1180x833.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/SE-photo-960x678.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/SE-photo.jpg 2048w\" sizes=\"(max-width: 410px) 100vw, 410px\">\u003cfigcaption class=\"wp-caption-text\">Dr. Shaundra Eichstadt made the transition from medicine to digital health. \u003ccite>(Shaundra Eichstadt )\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Eichstadt graduated from Stanford and pursued several years of residency, specializing in plastic and reconstructive surgery.\u003c/p>\n\u003cp>\"I realized that the system isn't designed for doctors to make the real change you would like to for the patient,\" she said. Eichstadt said she believed that she could make a bigger impact elsewhere.\u003c/p>\n\u003cp>Many of the dropout docs expressed a desire to improve the doctor-patient experience. In interviews with \u003cem>KQED,\u003c/em> several said they spent very little time administering care during medical school, and they felt that patients were too often kept out of the loop.\u003c/p>\n\u003cp>A recent study found that doctors-in-training spend\u003ca href=\"http://well.blogs.nytimes.com/2013/05/30/for-new-doctors-8-minutes-per-patient/\"> an average of just eight minutes\u003c/a> with each patient. This is a drastic decrease from previous generations and is linked to more record-keeping requirements and restricted on-duty hours.\u003c/p>\n\u003cp>Connie Chen still practices medicine a half-day each week. But shortly after medical school, Chen co-founded an app called \u003ca href=\"https://www.vida.com\">Vida\u003c/a>, which connects people with chronic diseases to virtual health coaches, like nutritionists and nurses.\u003c/p>\n\u003cp>Chen said she learned very little about nutrition at medical school. But digital health opened up opportunities for Chen to educate herself about wellness, so she can help patients stay healthy.\u003c/p>\n\u003caside class=\"pullquote alignright\">“Tech culture is very appealing when juxtaposed against the hierarchy and myriad hoops to be jumped through in clinical medicine.\"\u003ccite>Rebecca Coelius, Director of Health at Code for America\u003c/cite>\u003c/aside>\n\u003cp>\"Traditional health care is really oriented to make the life of the provider easier,\" she said. \"Your patients cycle in and out of the hospital, and very often, no one makes enough of an effort to communicate with them.\"\u003c/p>\n\u003cp>\u003cstrong>Lack of Opportunities \u003c/strong>\u003c/p>\n\u003cp>Other dropout docs said they felt pushed out of medicine, due to the lack of career opportunities or earning potential. Family practitioners, who serve at the front lines of health care, \u003ca href=\"http://healthland.time.com/2012/04/27/doctors-salaries-who-earns-the-most-and-the-least/\">are paid the least\u003c/a>.\u003c/p>\n\u003cp>Recent studies have also shown rising levels of \u003ca href=\"http://khn.org/news/doctor-burnout/\">discontent among primary care doctors\u003c/a>. Nearly half of 7,200 doctors who responded to a Mayo Clinic survey in 2012 said they felt a lack of enthusiasm about medicine or cynicism about it. A decade ago, one quarter of doctors reported feeling burnt out.\u003c/p>\n\u003cp>\"I loved working with patients but I looked around me and realized that I didn't want the jobs of anybody who had 'succeeded' as a clinician,\" said Rebecca Coelius, who graduated with an MD from UCSF.\u003c/p>\n\u003cp>Coelius now advises a number of health-tech startups, including Doximity and previously worked for \u003ca href=\"http://healthloop.com/\">HealthLoop\u003c/a>, which was founded by another entrepreneurial MD, Dr. Jordan Shlain. She's also worked for the government as a medical innovation officer.\u003c/p>\n\u003cp>\"Tech culture is very appealing when juxtaposed against the hierarchy and myriad hoops to be jumped through in clinical medicine,\" she explained.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>Correction: An earlier version of this article contained data from Doximity on the percentage of Stanford and UCSF medical students applying to residency programs. Doximity says it failed to factor in medical school graduates who pursue further post-graduate studies and that the Stanford information it provided was inaccurate. Stanford officials say Stanford has a 95 percent rate of medical students pursuing residency after graduation.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/11960/increasingly-young-bay-area-doctors-leave-medicine-for-digital-health","authors":["3252"],"categories":["futureofyou_452"],"tags":["futureofyou_190","futureofyou_511","futureofyou_341","futureofyou_469","futureofyou_80","futureofyou_173","futureofyou_513","futureofyou_512","futureofyou_514","futureofyou_336"],"featImg":"futureofyou_12247","label":"futureofyou"}},"programsReducer":{"possible":{"id":"possible","title":"Possible","info":"Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. Together in Possible, Hoffman and Finger lead enlightening discussions about building a brighter collective future. The show features interviews with visionary guests like Trevor Noah, Sam Altman and Janette Sadik-Khan. Possible paints an optimistic portrait of the world we can create through science, policy, business, art and our shared humanity. It asks: What if everything goes right for once? How can we get there? 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You ask the questions. You decide what Bay Curious investigates. 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Hosted by journalists of color, the show tackles the subject of race head-on, exploring how it impacts every part of society — from politics and pop culture to history, sports and more.\u003cbr />\u003cbr />\u003cem>Life Kit\u003c/em>, which will be in the second part of the hour, guides you through spaces and feelings no one prepares you for — from finances to mental health, from workplace microaggressions to imposter syndrome, from relationships to parenting. The show features experts with real world experience and shares their knowledge. Because everyone needs a little help being human.\u003cbr />\u003cbr />\u003ca href=\"https://www.npr.org/podcasts/510312/codeswitch\">\u003cem>Code Switch\u003c/em> offical site and podcast\u003c/a>\u003cbr />\u003ca href=\"https://www.npr.org/lifekit\">\u003cem>Life Kit\u003c/em> offical site and podcast\u003c/a>\u003cbr />","airtime":"SUN 9pm-10pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Code-Switch-Life-Kit-Podcast-Tile-360x360-1.jpg","meta":{"site":"radio","source":"npr"},"link":"/radio/program/code-switch-life-kit","subscribe":{"apple":"https://podcasts.apple.com/podcast/1112190608?mt=2&at=11l79Y&ct=nprdirectory","google":"https://podcasts.google.com/feed/aHR0cHM6Ly93d3cubnByLm9yZy9yc3MvcG9kY2FzdC5waHA_aWQ9NTEwMzEy","spotify":"https://open.spotify.com/show/3bExJ9JQpkwNhoHvaIIuyV","rss":"https://feeds.npr.org/510312/podcast.xml"}},"commonwealth-club":{"id":"commonwealth-club","title":"Commonwealth Club of California Podcast","info":"The Commonwealth Club of California is the nation's oldest and largest public affairs forum. As a non-partisan forum, The Club brings to the public airwaves diverse viewpoints on important topics. The Club's weekly radio broadcast - the oldest in the U.S., dating back to 1924 - is carried across the nation on public radio stations and is now podcasting. Our website archive features audio of our recent programs, as well as selected speeches from our long and distinguished history. This podcast feed is usually updated twice a week and is always un-edited.","airtime":"THU 10pm, FRI 1am","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Commonwealth-Club-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.commonwealthclub.org/podcasts","meta":{"site":"news","source":"Commonwealth Club of California"},"link":"/radio/program/commonwealth-club","subscribe":{"apple":"https://itunes.apple.com/us/podcast/commonwealth-club-of-california-podcast/id976334034?mt=2","google":"https://podcasts.google.com/feed/aHR0cDovL3d3dy5jb21tb253ZWFsdGhjbHViLm9yZy9hdWRpby9wb2RjYXN0L3dlZWtseS54bWw","tuneIn":"https://tunein.com/radio/Commonwealth-Club-of-California-p1060/"}},"considerthis":{"id":"considerthis","title":"Consider This","tagline":"Make sense of the day","info":"Make sense of the day. Every weekday afternoon, Consider This helps you consider the major stories of the day in less than 15 minutes, featuring the reporting and storytelling resources of NPR. Plus, KQED’s Bianca Taylor brings you the local KQED news you need to know.","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Consider-This-Podcast-Tile-703x703-1.jpg","imageAlt":"Consider This from NPR and KQED","officialWebsiteLink":"/podcasts/considerthis","meta":{"site":"news","source":"kqed","order":"7"},"link":"/podcasts/considerthis","subscribe":{"apple":"https://podcasts.apple.com/podcast/id1503226625?mt=2&at=11l79Y&ct=nprdirectory","npr":"https://rpb3r.app.goo.gl/coronavirusdaily","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5ucHIub3JnLzUxMDM1NS9wb2RjYXN0LnhtbA","spotify":"https://open.spotify.com/show/3Z6JdCS2d0eFEpXHKI6WqH"}},"forum":{"id":"forum","title":"Forum","tagline":"The conversation starts here","info":"KQED’s live call-in program discussing local, state, national and international issues, as well as in-depth interviews.","airtime":"MON-FRI 9am-11am, 10pm-11pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Forum-Podcast-Tile-703x703-1.jpg","imageAlt":"KQED Forum with Mina Kim and Alexis Madrigal","officialWebsiteLink":"/forum","meta":{"site":"news","source":"kqed","order":"8"},"link":"/forum","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/kqeds-forum/id73329719","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkM5NTU3MzgxNjMz","npr":"https://www.npr.org/podcasts/432307980/forum","stitcher":"https://www.stitcher.com/podcast/kqedfm-kqeds-forum-podcast","rss":"https://feeds.megaphone.fm/KQINC9557381633"}},"freakonomics-radio":{"id":"freakonomics-radio","title":"Freakonomics Radio","info":"Freakonomics Radio is a one-hour award-winning podcast and public-radio project hosted by Stephen Dubner, with co-author Steve Levitt as a regular guest. It is produced in partnership with WNYC.","imageSrc":"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2018/05/freakonomicsRadio.png","officialWebsiteLink":"http://freakonomics.com/","airtime":"SUN 1am-2am, SAT 3pm-4pm","meta":{"site":"radio","source":"WNYC"},"link":"/radio/program/freakonomics-radio","subscribe":{"npr":"https://rpb3r.app.goo.gl/4s8b","apple":"https://itunes.apple.com/us/podcast/freakonomics-radio/id354668519","tuneIn":"https://tunein.com/podcasts/WNYC-Podcasts/Freakonomics-Radio-p272293/","rss":"https://feeds.feedburner.com/freakonomicsradio"}},"fresh-air":{"id":"fresh-air","title":"Fresh Air","info":"Hosted by Terry Gross, \u003cem>Fresh Air from WHYY\u003c/em> is the Peabody Award-winning weekday magazine of contemporary arts and issues. One of public radio's most popular programs, Fresh Air features intimate conversations with today's biggest luminaries.","airtime":"MON-FRI 7pm-8pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Fresh-Air-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.npr.org/programs/fresh-air/","meta":{"site":"radio","source":"npr"},"link":"/radio/program/fresh-air","subscribe":{"npr":"https://rpb3r.app.goo.gl/4s8b","apple":"https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?s=143441&mt=2&id=214089682&at=11l79Y&ct=nprdirectory","tuneIn":"https://tunein.com/radio/Fresh-Air-p17/","rss":"https://feeds.npr.org/381444908/podcast.xml"}},"here-and-now":{"id":"here-and-now","title":"Here & Now","info":"A live production of NPR and WBUR Boston, in collaboration with stations across the country, Here & Now reflects the fluid world of news as it's happening in the middle of the day, with timely, in-depth news, interviews and conversation. Hosted by Robin Young, Jeremy Hobson and Tonya Mosley.","airtime":"MON-THU 11am-12pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Here-And-Now-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"http://www.wbur.org/hereandnow","meta":{"site":"news","source":"npr"},"link":"/radio/program/here-and-now","subsdcribe":{"apple":"https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?mt=2&id=426698661","tuneIn":"https://tunein.com/radio/Here--Now-p211/","rss":"https://feeds.npr.org/510051/podcast.xml"}},"how-i-built-this":{"id":"how-i-built-this","title":"How I Built This with Guy Raz","info":"Guy Raz dives into the stories behind some of the world's best known companies. How I Built This weaves a narrative journey about innovators, entrepreneurs and idealists—and the movements they built.","imageSrc":"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2018/05/howIBuiltThis.png","officialWebsiteLink":"https://www.npr.org/podcasts/510313/how-i-built-this","airtime":"SUN 7:30pm-8pm","meta":{"site":"news","source":"npr"},"link":"/radio/program/how-i-built-this","subscribe":{"npr":"https://rpb3r.app.goo.gl/3zxy","apple":"https://itunes.apple.com/us/podcast/how-i-built-this-with-guy-raz/id1150510297?mt=2","tuneIn":"https://tunein.com/podcasts/Arts--Culture-Podcasts/How-I-Built-This-p910896/","rss":"https://feeds.npr.org/510313/podcast.xml"}},"inside-europe":{"id":"inside-europe","title":"Inside Europe","info":"Inside Europe, a one-hour weekly news magazine hosted by Helen Seeney and Keith Walker, explores the topical issues shaping the continent. No other part of the globe has experienced such dynamic political and social change in recent years.","airtime":"SAT 3am-4am","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Inside-Europe-Podcast-Tile-300x300-1.jpg","meta":{"site":"news","source":"Deutsche Welle"},"link":"/radio/program/inside-europe","subscribe":{"apple":"https://itunes.apple.com/us/podcast/inside-europe/id80106806?mt=2","tuneIn":"https://tunein.com/radio/Inside-Europe-p731/","rss":"https://partner.dw.com/xml/podcast_inside-europe"}},"latino-usa":{"id":"latino-usa","title":"Latino USA","airtime":"MON 1am-2am, SUN 6pm-7pm","info":"Latino USA, the radio journal of news and culture, is the only national, English-language radio program produced from a Latino perspective.","imageSrc":"https://ww2.kqed.org/radio/wp-content/uploads/sites/50/2018/04/latinoUsa.jpg","officialWebsiteLink":"http://latinousa.org/","meta":{"site":"news","source":"npr"},"link":"/radio/program/latino-usa","subscribe":{"npr":"https://rpb3r.app.goo.gl/xtTd","apple":"https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?s=143441&mt=2&id=79681317&at=11l79Y&ct=nprdirectory","tuneIn":"https://tunein.com/radio/Latino-USA-p621/","rss":"https://feeds.npr.org/510016/podcast.xml"}},"live-from-here-highlights":{"id":"live-from-here-highlights","title":"Live from Here Highlights","info":"Chris Thile steps to the mic as the host of Live from Here (formerly A Prairie Home Companion), a live public radio variety show. 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Updated Monday through Friday at about 3:30 p.m. PT.","airtime":"MON-FRI 4pm-4:30pm, MON-WED 6:30pm-7pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Marketplace-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.marketplace.org/","meta":{"site":"news","source":"American Public Media"},"link":"/radio/program/marketplace","subscribe":{"apple":"https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?s=143441&mt=2&id=201853034&at=11l79Y&ct=nprdirectory","tuneIn":"https://tunein.com/radio/APM-Marketplace-p88/","rss":"https://feeds.publicradio.org/public_feeds/marketplace-pm/rss/rss"}},"mindshift":{"id":"mindshift","title":"MindShift","tagline":"A podcast about the future of learning and how we raise our kids","info":"The MindShift podcast explores the innovations in education that are shaping how kids learn. Hosts Ki Sung and Katrina Schwartz introduce listeners to educators, researchers, parents and students who are developing effective ways to improve how kids learn. We cover topics like how fed-up administrators are developing surprising tactics to deal with classroom disruptions; how listening to podcasts are helping kids develop reading skills; the consequences of overparenting; and why interdisciplinary learning can engage students on all ends of the traditional achievement spectrum. This podcast is part of the MindShift education site, a division of KQED News. KQED is an NPR/PBS member station based in San Francisco. You can also visit the MindShift website for episodes and supplemental blog posts or tweet us \u003ca href=\"https://twitter.com/MindShiftKQED\">@MindShiftKQED\u003c/a> or visit us at \u003ca href=\"/mindshift\">MindShift.KQED.org\u003c/a>","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Mindshift-Podcast-Tile-703x703-1.jpg","imageAlt":"KQED MindShift: How We Will Learn","officialWebsiteLink":"/mindshift/","meta":{"site":"news","source":"kqed","order":"2"},"link":"/podcasts/mindshift","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/mindshift-podcast/id1078765985","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkM1NzY0NjAwNDI5","npr":"https://www.npr.org/podcasts/464615685/mind-shift-podcast","stitcher":"https://www.stitcher.com/podcast/kqed/stories-teachers-share","spotify":"https://open.spotify.com/show/0MxSpNYZKNprFLCl7eEtyx"}},"morning-edition":{"id":"morning-edition","title":"Morning Edition","info":"\u003cem>Morning Edition\u003c/em> takes listeners around the country and the world with multi-faceted stories and commentaries every weekday. Hosts Steve Inskeep, David Greene and Rachel Martin bring you the latest breaking news and features to prepare you for the day.","airtime":"MON-FRI 3am-9am","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Morning-Edition-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.npr.org/programs/morning-edition/","meta":{"site":"news","source":"npr"},"link":"/radio/program/morning-edition"},"onourwatch":{"id":"onourwatch","title":"On Our Watch","tagline":"Police secrets, unsealed","info":"For decades, the process for how police police themselves has been inconsistent – if not opaque. In some states, like California, these proceedings were completely hidden. After a new police transparency law unsealed scores of internal affairs files, our reporters set out to examine these cases and the shadow world of police discipline. 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