Concord Woman With Rare Disease Granted Reprieve From Deportation
Bay Area Medical Community Protests Possible Deportation of Patient Receiving Lifesaving Treatment
Congressional Hearing to Review Agency's End of Humanitarian Protections for Sick Immigrants
Feds to Reconsider Case of Bay Area Woman Getting Lifesaving Treatment Who Faces Deportation
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Jeremy grew up in Cincinnati, Ohio, and graduated from UC Berkeley.","avatar":"https://secure.gravatar.com/avatar/3921a64ceb9ed5d0ba47d9ae9782f1ab?s=600&d=blank&r=g","twitter":"jersiegel","facebook":null,"instagram":null,"linkedin":null,"sites":[{"site":"arts","roles":["editor"]},{"site":"news","roles":["subscriber"]},{"site":"science","roles":["editor"]}],"headData":{"title":"Jeremy Siegel | KQED","description":"KQED Contributor","ogImgSrc":"https://secure.gravatar.com/avatar/3921a64ceb9ed5d0ba47d9ae9782f1ab?s=600&d=blank&r=g","twImgSrc":"https://secure.gravatar.com/avatar/3921a64ceb9ed5d0ba47d9ae9782f1ab?s=600&d=blank&r=g"},"isLoading":false,"link":"/author/jeremysiegel"}},"breakingNewsReducer":{},"campaignFinanceReducer":{},"firebase":{"requesting":{},"requested":{},"timestamps":{},"data":{},"ordered":{},"auth":{"isLoaded":false,"isEmpty":true},"authError":null,"profile":{"isLoaded":false,"isEmpty":true},"listeners":{"byId":{},"allIds":[]},"isInitializing":false,"errors":[]},"navBarReducer":{"navBarId":"news","fullView":true,"showPlayer":false},"navMenuReducer":{"menus":[{"key":"menu1","items":[{"name":"News","link":"/","type":"title"},{"name":"Politics","link":"/politics"},{"name":"Science","link":"/science"},{"name":"Education","link":"/educationnews"},{"name":"Housing","link":"/housing"},{"name":"Immigration","link":"/immigration"},{"name":"Criminal Justice","link":"/criminaljustice"},{"name":"Silicon Valley","link":"/siliconvalley"},{"name":"Forum","link":"/forum"},{"name":"The California Report","link":"/californiareport"}]},{"key":"menu2","items":[{"name":"Arts & Culture","link":"/arts","type":"title"},{"name":"Critics’ Picks","link":"/thedolist"},{"name":"Cultural Commentary","link":"/artscommentary"},{"name":"Food & Drink","link":"/food"},{"name":"Bay Area Hip-Hop","link":"/bayareahiphop"},{"name":"Rebel Girls","link":"/rebelgirls"},{"name":"Arts Video","link":"/artsvideos"}]},{"key":"menu3","items":[{"name":"Podcasts","link":"/podcasts","type":"title"},{"name":"Bay Curious","link":"/podcasts/baycurious"},{"name":"Rightnowish","link":"/podcasts/rightnowish"},{"name":"The Bay","link":"/podcasts/thebay"},{"name":"On Our Watch","link":"/podcasts/onourwatch"},{"name":"Mindshift","link":"/podcasts/mindshift"},{"name":"Consider This","link":"/podcasts/considerthis"},{"name":"Political Breakdown","link":"/podcasts/politicalbreakdown"}]},{"key":"menu4","items":[{"name":"Live Radio","link":"/radio","type":"title"},{"name":"TV","link":"/tv","type":"title"},{"name":"Events","link":"/events","type":"title"},{"name":"For Educators","link":"/education","type":"title"},{"name":"Support KQED","link":"/support","type":"title"},{"name":"About","link":"/about","type":"title"},{"name":"Help Center","link":"https://kqed-helpcenter.kqed.org/s","type":"title"}]}]},"pagesReducer":{},"postsReducer":{"stream_live":{"type":"live","id":"stream_live","audioUrl":"https://streams.kqed.org/kqedradio","title":"Live Stream","excerpt":"Live Stream information currently unavailable.","link":"/radio","featImg":"","label":{"name":"KQED Live","link":"/"}},"stream_kqedNewscast":{"type":"posts","id":"stream_kqedNewscast","audioUrl":"https://www.kqed.org/.stream/anon/radio/RDnews/newscast.mp3?_=1","title":"KQED Newscast","featImg":"","label":{"name":"88.5 FM","link":"/"}},"news_11790433":{"type":"posts","id":"news_11790433","meta":{"index":"posts_1591205157","site":"news","id":"11790433","score":null,"sort":[1576009297000]},"guestAuthors":[],"slug":"concord-woman-with-rare-disease-granted-reprieve-from-deportation","title":"Concord Woman With Rare Disease Granted Reprieve From Deportation","publishDate":1576009297,"format":"standard","headTitle":"The California Report | KQED News","labelTerm":{"term":72,"site":"news"},"content":"\u003cp>A Bay Area woman receiving lifesaving treatment for a rare genetic condition, who could die if she were deported, has been approved by the federal government to remain in the U.S. for two more years.\u003c/p>\n\u003cp>The reprieve marks a reversal by the Trump administration, and comes months after immigration authorities told Concord resident Maria Isabel Bueso that she and her immediate family had 33 days to leave the country or face deportation.\u003c/p>\n\u003cp>Bueso, 24, depends on a weekly intravenous infusion of medicine at an Oakland hospital to survive. The treatment is not available in her native Guatemala.\u003c/p>\n\u003cp>In a letter drafted Dec. 6, U.S. Citizenship and Immigration Services' San Francisco district director, John Kramar, informed Bueso that her request for humanitarian relief, known as deferred action, had been granted and is effective until Aug. 13, 2021.\u003c/p>\n\u003cp>[pullquote size='medium' align='right' citation=\"Maria Isabel Bueso\"]'What I learned from this was to not be afraid — to speak up from your heart and to know that your voice matters.'[/pullquote]\u003c/p>\n\u003cp>“I was so happy and relieved,” Bueso said. “I really appreciate everyone who has been so kind to my family and given us support.”\u003c/p>\n\u003cp>Forcing Bueso to leave the U.S. would be akin to “pulling the plug on a respirator,” said Dr. Paul Harmatz, a pediatrician at UCSF Benioff Children's Hospital, who treats her.\u003c/p>\n\u003cp>The genetic disease, which stunts normal skeletal development and can cause respiratory complications and organ degeneration, has left Bueso confined to a wheelchair and breathing through a device implanted in her throat.\u003c/p>\n\u003cp>Bueso came to the U.S. with her family when she was 7, after Harmatz and other doctors in the Bay Area invited her to participate in a clinical trial for a new drug to treat her condition — \u003ca href=\"https://ghr.nlm.nih.gov/condition/mucopolysaccharidosis-type-vi\" target=\"_blank\" rel=\"noopener noreferrer\">Mucopolysaccharidosis type VI\u003c/a>. Her participation in that trial was very important in order for the U.S. Food and Drug Administration to approve the drug, called Naglazyme, said Harmatz, who led the trial.\u003c/p>\n\u003cfigure id=\"attachment_11790508\" class=\"wp-caption alignnone\" style=\"max-width: 1920px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2019/12/RS38885_IMG_1325-qut.jpg\">\u003cimg class=\"wp-image-11790508 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2019/12/RS38885_IMG_1325-qut.jpg\" alt=\"\" width=\"1920\" height=\"1440\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2019/12/RS38885_IMG_1325-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2019/12/RS38885_IMG_1325-qut-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2019/12/RS38885_IMG_1325-qut-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2019/12/RS38885_IMG_1325-qut-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2019/12/RS38885_IMG_1325-qut-1200x900.jpg 1200w, https://ww2.kqed.org/app/uploads/sites/10/2019/12/RS38885_IMG_1325-qut-1832x1374.jpg 1832w, https://ww2.kqed.org/app/uploads/sites/10/2019/12/RS38885_IMG_1325-qut-1376x1032.jpg 1376w, https://ww2.kqed.org/app/uploads/sites/10/2019/12/RS38885_IMG_1325-qut-1044x783.jpg 1044w, https://ww2.kqed.org/app/uploads/sites/10/2019/12/RS38885_IMG_1325-qut-632x474.jpg 632w, https://ww2.kqed.org/app/uploads/sites/10/2019/12/RS38885_IMG_1325-qut-536x402.jpg 536w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Maria Isabel Bueso (R) and her mother, Karla Bueso, at their attorney's offices in San Francisco on Aug. 29, 2019. 'I haven't slept for days,' said Karla at the time, out of concern that her daughter could lose vital medical treatment in the U.S. \u003ccite>(Farida Jhabvala Romero/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Bueso and her family were subsequently able to renew their deferred action status several times. Bueso has since become a nationally renowned advocate for people with rare diseases.\u003c/p>\n\u003cp>Last year, Bueso graduated summa cum laude from CSU East Bay, where she helped create a scholarship fund for students with disabilities.\u003c/p>\n\u003cp>But in early August, USCIS stopped reviewing almost all applications for deferred action, including those of immigrants in need of medical treatment in the U.S.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>About 700 people had pending applications for the humanitarian protection at the time, including 420 who were sent denial letters, according to agency officials who testified at \u003ca href=\"https://oversight.house.gov/legislation/hearings/the-administration-s-apparent-revocation-of-medical-deferred-action-for\" target=\"_blank\" rel=\"noopener noreferrer\">a hearing\u003c/a> of the House Committee on Oversight and Reform in September.\u003c/p>\n\u003cp>During the hearing, at which Bueso testified, USCIS officials were excoriated by several lawmakers, and public outcry grew in the following days. A week later, on Sept. 19, the agency announced it was resuming consideration of nonmilitary deferred action requests on a case-by-case basis.\u003c/p>\n\u003cp>The renewal for Bueso and her family — which includes work permits — means Bueso’s father, Alberto, can continue his job in sales at an import-export company. His employment supports the family and pays for Bueso’s medical care.\u003c/p>\n\u003cp>USCIS declined to comment on Bueso’s case.\u003c/p>\n\u003cp>[aside label=\"related coverage\" tag=\"deferred-action\"]On Monday, Rep. Mark DeSaulnier, a Democrat representing Contra Costa County who championed Bueso’s case and called for the congressional hearing, said he tepidly applauded USCIS’ decision to allow Bueso to remain in the country.\u003c/p>\n\u003cp>“This is a good first step,” he said. “We're continuing to work on a permanent solution, but at least this can reasonably reduce our fears for two years.”\u003c/p>\n\u003cp>DeSaulnier introduced a \u003ca href=\"https://www.congress.gov/bill/116th-congress/house-bill/4225\" target=\"_blank\" rel=\"noopener noreferrer\">bill\u003c/a> in the House in late August that would grant legal permanent resident status to Bueso and her immediate family. Sens. Dianne Feinstein, D-California, and Lindsey Graham, R-South Carolina, introduced similar legislation in the Senate.\u003c/p>\n\u003cp>In collaboration with Democratic Rep. Ayanna Pressley of Massachusetts, who also has constituents affected by the halt to deferred action, DeSaulnier said he is also working on a broader proposal to provide more permanent relief to other immigrants in need of medical treatment in the U.S.\u003c/p>\n\u003cp>This fall, Bueso was recognized by both the \u003ca href=\"https://rareadvocates.org/rare-disease-legislative-advocates-honor-leaders-who-inspire-transformational-public-policy-solutions/\" target=\"_blank\" rel=\"noopener noreferrer\">Rare Disease Legislative Advocates\u003c/a> and the \u003ca href=\"https://members.eastbayleadershipcouncil.com/blog/eblc-news-updates-97/post/isabel-bueso-and-betsy-biern-to-keynote-the-philanthropy-awards-21067\" target=\"_blank\" rel=\"noopener noreferrer\">East Bay Leadership Council\u003c/a> for her work advocating for immigrants who depend on deferred action status to receive lifesaving medical treatment in the U.S.\u003c/p>\n\u003cp>Bueso said that she and her family have been living in limbo for the last six months, a period full of fear and stress. But her ordeal, she added, has also been an important learning experience.\u003c/p>\n\u003cp>“What I learned from this was to not be afraid — to speak up from your heart and to know that your voice matters,” she said.\u003c/p>\n\u003cp>\u003c/p>\n","blocks":[],"excerpt":"The Trump administration's policy reversal grants two-year deferred action protection to Guatemalan-born Maria Isabel Bueso, whose life depends on weekly medical treatments at an Oakland hospital.","status":"publish","parent":0,"modified":1576025741,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":25,"wordCount":872},"headData":{"title":"Concord Woman With Rare Disease Granted Reprieve From Deportation | KQED","description":"The Trump administration's policy reversal grants two-year deferred action protection to Guatemalan-born Maria Isabel Bueso, whose life depends on weekly medical treatments at an Oakland hospital.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"11790433 https://ww2.kqed.org/news/?p=11790433","disqusUrl":"https://ww2.kqed.org/news/2019/12/10/concord-woman-with-rare-disease-granted-reprieve-from-deportation/","disqusTitle":"Concord Woman With Rare Disease Granted Reprieve From Deportation","audioUrl":"https://www.kqed.org/.stream/anon/radio/tcr/2019/12/Romerodeportation.mp3","audioTrackLength":62,"path":"/news/11790433/concord-woman-with-rare-disease-granted-reprieve-from-deportation","audioDuration":81000,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>A Bay Area woman receiving lifesaving treatment for a rare genetic condition, who could die if she were deported, has been approved by the federal government to remain in the U.S. for two more years.\u003c/p>\n\u003cp>The reprieve marks a reversal by the Trump administration, and comes months after immigration authorities told Concord resident Maria Isabel Bueso that she and her immediate family had 33 days to leave the country or face deportation.\u003c/p>\n\u003cp>Bueso, 24, depends on a weekly intravenous infusion of medicine at an Oakland hospital to survive. The treatment is not available in her native Guatemala.\u003c/p>\n\u003cp>In a letter drafted Dec. 6, U.S. Citizenship and Immigration Services' San Francisco district director, John Kramar, informed Bueso that her request for humanitarian relief, known as deferred action, had been granted and is effective until Aug. 13, 2021.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"'What I learned from this was to not be afraid — to speak up from your heart and to know that your voice matters.'","name":"pullquote","attributes":{"named":{"size":"medium","align":"right","citation":"Maria Isabel Bueso","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“I was so happy and relieved,” Bueso said. “I really appreciate everyone who has been so kind to my family and given us support.”\u003c/p>\n\u003cp>Forcing Bueso to leave the U.S. would be akin to “pulling the plug on a respirator,” said Dr. Paul Harmatz, a pediatrician at UCSF Benioff Children's Hospital, who treats her.\u003c/p>\n\u003cp>The genetic disease, which stunts normal skeletal development and can cause respiratory complications and organ degeneration, has left Bueso confined to a wheelchair and breathing through a device implanted in her throat.\u003c/p>\n\u003cp>Bueso came to the U.S. with her family when she was 7, after Harmatz and other doctors in the Bay Area invited her to participate in a clinical trial for a new drug to treat her condition — \u003ca href=\"https://ghr.nlm.nih.gov/condition/mucopolysaccharidosis-type-vi\" target=\"_blank\" rel=\"noopener noreferrer\">Mucopolysaccharidosis type VI\u003c/a>. Her participation in that trial was very important in order for the U.S. Food and Drug Administration to approve the drug, called Naglazyme, said Harmatz, who led the trial.\u003c/p>\n\u003cfigure id=\"attachment_11790508\" class=\"wp-caption alignnone\" style=\"max-width: 1920px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2019/12/RS38885_IMG_1325-qut.jpg\">\u003cimg class=\"wp-image-11790508 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2019/12/RS38885_IMG_1325-qut.jpg\" alt=\"\" width=\"1920\" height=\"1440\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2019/12/RS38885_IMG_1325-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2019/12/RS38885_IMG_1325-qut-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2019/12/RS38885_IMG_1325-qut-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2019/12/RS38885_IMG_1325-qut-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2019/12/RS38885_IMG_1325-qut-1200x900.jpg 1200w, https://ww2.kqed.org/app/uploads/sites/10/2019/12/RS38885_IMG_1325-qut-1832x1374.jpg 1832w, https://ww2.kqed.org/app/uploads/sites/10/2019/12/RS38885_IMG_1325-qut-1376x1032.jpg 1376w, https://ww2.kqed.org/app/uploads/sites/10/2019/12/RS38885_IMG_1325-qut-1044x783.jpg 1044w, https://ww2.kqed.org/app/uploads/sites/10/2019/12/RS38885_IMG_1325-qut-632x474.jpg 632w, https://ww2.kqed.org/app/uploads/sites/10/2019/12/RS38885_IMG_1325-qut-536x402.jpg 536w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Maria Isabel Bueso (R) and her mother, Karla Bueso, at their attorney's offices in San Francisco on Aug. 29, 2019. 'I haven't slept for days,' said Karla at the time, out of concern that her daughter could lose vital medical treatment in the U.S. \u003ccite>(Farida Jhabvala Romero/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Bueso and her family were subsequently able to renew their deferred action status several times. Bueso has since become a nationally renowned advocate for people with rare diseases.\u003c/p>\n\u003cp>Last year, Bueso graduated summa cum laude from CSU East Bay, where she helped create a scholarship fund for students with disabilities.\u003c/p>\n\u003cp>But in early August, USCIS stopped reviewing almost all applications for deferred action, including those of immigrants in need of medical treatment in the U.S.\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>About 700 people had pending applications for the humanitarian protection at the time, including 420 who were sent denial letters, according to agency officials who testified at \u003ca href=\"https://oversight.house.gov/legislation/hearings/the-administration-s-apparent-revocation-of-medical-deferred-action-for\" target=\"_blank\" rel=\"noopener noreferrer\">a hearing\u003c/a> of the House Committee on Oversight and Reform in September.\u003c/p>\n\u003cp>During the hearing, at which Bueso testified, USCIS officials were excoriated by several lawmakers, and public outcry grew in the following days. A week later, on Sept. 19, the agency announced it was resuming consideration of nonmilitary deferred action requests on a case-by-case basis.\u003c/p>\n\u003cp>The renewal for Bueso and her family — which includes work permits — means Bueso’s father, Alberto, can continue his job in sales at an import-export company. His employment supports the family and pays for Bueso’s medical care.\u003c/p>\n\u003cp>USCIS declined to comment on Bueso’s case.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"aside","attributes":{"named":{"label":"related coverage ","tag":"deferred-action"},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>On Monday, Rep. Mark DeSaulnier, a Democrat representing Contra Costa County who championed Bueso’s case and called for the congressional hearing, said he tepidly applauded USCIS’ decision to allow Bueso to remain in the country.\u003c/p>\n\u003cp>“This is a good first step,” he said. “We're continuing to work on a permanent solution, but at least this can reasonably reduce our fears for two years.”\u003c/p>\n\u003cp>DeSaulnier introduced a \u003ca href=\"https://www.congress.gov/bill/116th-congress/house-bill/4225\" target=\"_blank\" rel=\"noopener noreferrer\">bill\u003c/a> in the House in late August that would grant legal permanent resident status to Bueso and her immediate family. Sens. Dianne Feinstein, D-California, and Lindsey Graham, R-South Carolina, introduced similar legislation in the Senate.\u003c/p>\n\u003cp>In collaboration with Democratic Rep. Ayanna Pressley of Massachusetts, who also has constituents affected by the halt to deferred action, DeSaulnier said he is also working on a broader proposal to provide more permanent relief to other immigrants in need of medical treatment in the U.S.\u003c/p>\n\u003cp>This fall, Bueso was recognized by both the \u003ca href=\"https://rareadvocates.org/rare-disease-legislative-advocates-honor-leaders-who-inspire-transformational-public-policy-solutions/\" target=\"_blank\" rel=\"noopener noreferrer\">Rare Disease Legislative Advocates\u003c/a> and the \u003ca href=\"https://members.eastbayleadershipcouncil.com/blog/eblc-news-updates-97/post/isabel-bueso-and-betsy-biern-to-keynote-the-philanthropy-awards-21067\" target=\"_blank\" rel=\"noopener noreferrer\">East Bay Leadership Council\u003c/a> for her work advocating for immigrants who depend on deferred action status to receive lifesaving medical treatment in the U.S.\u003c/p>\n\u003cp>Bueso said that she and her family have been living in limbo for the last six months, a period full of fear and stress. But her ordeal, she added, has also been an important learning experience.\u003c/p>\n\u003cp>“What I learned from this was to not be afraid — to speak up from your heart and to know that your voice matters,” she said.\u003c/p>\n\u003cp>\u003c/p>\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11790433/concord-woman-with-rare-disease-granted-reprieve-from-deportation","authors":["8659"],"programs":["news_72"],"categories":["news_1169","news_8"],"tags":["news_26536","news_26596","news_21729","news_26595","news_26537"],"featImg":"news_11790436","label":"news_72"},"news_11772813":{"type":"posts","id":"news_11772813","meta":{"index":"posts_1591205157","site":"news","id":"11772813","score":null,"sort":[1567816374000]},"guestAuthors":[],"slug":"bay-area-nurses-protest-potential-deportation-of-patient-receiving-lifesaving-treatment","title":"Bay Area Medical Community Protests Possible Deportation of Patient Receiving Lifesaving Treatment","publishDate":1567816374,"format":"standard","headTitle":"KQED News","labelTerm":{"site":"news"},"content":"\u003cp>Dozens of nurses, doctors and immigrant advocates rallied Friday outside USCF Benioff Children's Hospital in Oakland in support of a 24-year-old undocumented Bay Area resident with a debilitating genetic disease who is at risk of being deported back to her native Guatemala.\u003c/p>\n\u003cp>Maria Isabel Bueso, who goes by Isabel, has an extremely rare condition known as Maroteaux-Lamy Syndrome that confines her to a wheelchair and requires that she use a medical device to breathe. She currently relies on weekly treatments at the hospital.\u003c/p>\n\u003cp>[pullquote size='medium' align='right' citation=\"Maria Isabel Bueso\"]'I’ll keep resharing this story with everyone to make sure this problem gets resolved.'[/pullquote]\u003c/p>\n\u003cp>Bueso, who lives in Concord with her family, arrived in the U.S. when she was just 7. Through \"deferred action,\" an Obama-era temporary humanitarian relief program, she has been able to remain here legally, renewing her status every few years.\u003c/p>\n\u003cp>But in August, after U.S. Citizenship and Immigration Services announced it was no longer considering deferred action for non-military requestors, authorities ordered Bueso and her family to leave the country by mid-September or face deportation.\u003c/p>\n\u003cp>On Monday, however, the agency shifted course again, \u003ca href=\"https://www.uscis.gov/news/alerts/uscis-re-opens-previously-pending-deferral-requests\" target=\"_blank\" rel=\"noopener\">saying \u003c/a>it would reopen certain pending cases of immigrants, particularly those with severe medical conditions.\u003c/p>\n\u003cp>Participants in Friday's rally said that regardless of whether the federal government walks back its policy, it's important to keep fighting for the rights of Bueso and other immigrants who depend on medical care in the U.S.\u003c/p>\n\u003cfigure id=\"attachment_11772910\" class=\"wp-caption alignnone\" style=\"max-width: 1920px\">\u003ca href=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2019/09/RS38921__DSC3550-qut.jpg\">\u003cimg class=\"size-full wp-image-11772910\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2019/09/RS38921__DSC3550-qut.jpg\" alt=\"\" width=\"1920\" height=\"1281\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38921__DSC3550-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38921__DSC3550-qut-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38921__DSC3550-qut-800x534.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38921__DSC3550-qut-1020x681.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38921__DSC3550-qut-1200x801.jpg 1200w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Students from the UC Berkeley-UCSF Joint Medical Program hold signs in support of Maria Isabel Bueso during Friday's rally at UCSF Benioff Children's Hospital in Oakland. \u003ccite>(Stephanie Lister/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\"I have formed deep, deep bonds with our immigrant communities over the years,\" said Diane Oviatt, a nurse at UCSF Benioff Children's Hospital Oakland, who has cared for Bueso, and was joined by other members of the California Nurses Association.\u003c/p>\n\u003cp>[aside label=\"related stories\" tag=\"deferred-action\"]\u003c/p>\n\u003cp>\"We are outraged by the way they are being treated by our government, and we will fight for their absolute right to a quality life and [for] our right to facilitate that by continuing to lovingly care for the whole family.\u003c/p>\n\u003cp>Bueso appeared alongside nurses at the rally and said it was an \"honor\" to receive so much support from her community.\u003c/p>\n\u003cp>\"My hope is that a solution will come out of this,\" she said. \"And I’ll keep resharing this story with everyone to make sure this problem gets resolved.\"\u003c/p>\n\u003cp>In a statement, Bueso's family said that news of the recent reconsideration was encouraging:\u003c/p>\n\u003cfigure id=\"attachment_11772907\" class=\"wp-caption alignnone\" style=\"max-width: 1920px\">\u003ca href=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2019/09/RS38923__DSC3658-qut.jpg\">\u003cimg class=\"size-full wp-image-11772907\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2019/09/RS38923__DSC3658-qut.jpg\" alt=\"\" width=\"1920\" height=\"1281\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38923__DSC3658-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38923__DSC3658-qut-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38923__DSC3658-qut-800x534.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38923__DSC3658-qut-1020x681.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38923__DSC3658-qut-1200x801.jpg 1200w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Bueso (left) and Assemblyman Rob Bonta on Sept. 6, 2019 in front of UCSF Benioff Children’s Hospital in Oakland, just before Bueso addresses a crowd of supporters. \u003ccite>(Stephanie Lister/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\"We see this as a first step in revisiting our status as U.S. residents and will be working with our local representatives to find a more permanent solution that guarantees Isabel's life is never put at risk again.\"\u003c/p>\n\u003cp>The House Committee on Oversight and Reform is expected to hold a hearing Wednesday on the Trump administration's policy on humanitarian protections for immigrants in need of medical treatment in the U.S.\u003c/p>\n\u003cp>Bueso plans to travel to Washington, D.C., for the hearing and is expected to testify before lawmakers about the importance of the medical care she and other immigrants receive.\u003c/p>\n\u003cfigure id=\"attachment_11772903\" class=\"wp-caption alignnone\" style=\"max-width: 1920px\">\u003ca href=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2019/09/RS38918__DSC3823-qut.jpg\">\u003cimg class=\"size-full wp-image-11772903\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2019/09/RS38918__DSC3823-qut.jpg\" alt=\"\" width=\"1920\" height=\"1281\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38918__DSC3823-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38918__DSC3823-qut-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38918__DSC3823-qut-800x534.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38918__DSC3823-qut-1020x681.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38918__DSC3823-qut-1200x801.jpg 1200w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Students from the UC Berkeley-UCSF Joint Medical Program hold banners in support of undocumented immigrant patients during Friday's rally at UCSF Benioff Children's Hospital in Oakland. \u003ccite>(Stephanie Lister/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003c/p>\n","blocks":[],"excerpt":"Immigration authorities recently ordered Maria Isabel Bueso and her family to leave the country by mid-September or face deportation after U.S. Citizenship and Immigration Services announced it was no longing considering deferred action for non-military requestors. But the agency this week said it was considering walking back this policy in certain cases. \r\n\r\n\r\n","status":"publish","parent":0,"modified":1567952497,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":18,"wordCount":616},"headData":{"title":"Bay Area Medical Community Protests Possible Deportation of Patient Receiving Lifesaving Treatment | KQED","description":"Immigration authorities recently ordered Maria Isabel Bueso and her family to leave the country by mid-September or face deportation after U.S. Citizenship and Immigration Services announced it was no longing considering deferred action for non-military requestors. But the agency this week said it was considering walking back this policy in certain cases. \r\n\r\n\r\n","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"11772813 https://ww2.kqed.org/news/?p=11772813","disqusUrl":"https://ww2.kqed.org/news/2019/09/06/bay-area-nurses-protest-potential-deportation-of-patient-receiving-lifesaving-treatment/","disqusTitle":"Bay Area Medical Community Protests Possible Deportation of Patient Receiving Lifesaving Treatment","path":"/news/11772813/bay-area-nurses-protest-potential-deportation-of-patient-receiving-lifesaving-treatment","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Dozens of nurses, doctors and immigrant advocates rallied Friday outside USCF Benioff Children's Hospital in Oakland in support of a 24-year-old undocumented Bay Area resident with a debilitating genetic disease who is at risk of being deported back to her native Guatemala.\u003c/p>\n\u003cp>Maria Isabel Bueso, who goes by Isabel, has an extremely rare condition known as Maroteaux-Lamy Syndrome that confines her to a wheelchair and requires that she use a medical device to breathe. She currently relies on weekly treatments at the hospital.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"'I’ll keep resharing this story with everyone to make sure this problem gets resolved.'","name":"pullquote","attributes":{"named":{"size":"medium","align":"right","citation":"Maria Isabel Bueso","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Bueso, who lives in Concord with her family, arrived in the U.S. when she was just 7. Through \"deferred action,\" an Obama-era temporary humanitarian relief program, she has been able to remain here legally, renewing her status every few years.\u003c/p>\n\u003cp>But in August, after U.S. Citizenship and Immigration Services announced it was no longer considering deferred action for non-military requestors, authorities ordered Bueso and her family to leave the country by mid-September or face deportation.\u003c/p>\n\u003cp>On Monday, however, the agency shifted course again, \u003ca href=\"https://www.uscis.gov/news/alerts/uscis-re-opens-previously-pending-deferral-requests\" target=\"_blank\" rel=\"noopener\">saying \u003c/a>it would reopen certain pending cases of immigrants, particularly those with severe medical conditions.\u003c/p>\n\u003cp>Participants in Friday's rally said that regardless of whether the federal government walks back its policy, it's important to keep fighting for the rights of Bueso and other immigrants who depend on medical care in the U.S.\u003c/p>\n\u003cfigure id=\"attachment_11772910\" class=\"wp-caption alignnone\" style=\"max-width: 1920px\">\u003ca href=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2019/09/RS38921__DSC3550-qut.jpg\">\u003cimg class=\"size-full wp-image-11772910\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2019/09/RS38921__DSC3550-qut.jpg\" alt=\"\" width=\"1920\" height=\"1281\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38921__DSC3550-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38921__DSC3550-qut-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38921__DSC3550-qut-800x534.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38921__DSC3550-qut-1020x681.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38921__DSC3550-qut-1200x801.jpg 1200w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Students from the UC Berkeley-UCSF Joint Medical Program hold signs in support of Maria Isabel Bueso during Friday's rally at UCSF Benioff Children's Hospital in Oakland. \u003ccite>(Stephanie Lister/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\"I have formed deep, deep bonds with our immigrant communities over the years,\" said Diane Oviatt, a nurse at UCSF Benioff Children's Hospital Oakland, who has cared for Bueso, and was joined by other members of the California Nurses Association.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"aside","attributes":{"named":{"label":"related stories ","tag":"deferred-action"},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\"We are outraged by the way they are being treated by our government, and we will fight for their absolute right to a quality life and [for] our right to facilitate that by continuing to lovingly care for the whole family.\u003c/p>\n\u003cp>Bueso appeared alongside nurses at the rally and said it was an \"honor\" to receive so much support from her community.\u003c/p>\n\u003cp>\"My hope is that a solution will come out of this,\" she said. \"And I’ll keep resharing this story with everyone to make sure this problem gets resolved.\"\u003c/p>\n\u003cp>In a statement, Bueso's family said that news of the recent reconsideration was encouraging:\u003c/p>\n\u003cfigure id=\"attachment_11772907\" class=\"wp-caption alignnone\" style=\"max-width: 1920px\">\u003ca href=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2019/09/RS38923__DSC3658-qut.jpg\">\u003cimg class=\"size-full wp-image-11772907\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2019/09/RS38923__DSC3658-qut.jpg\" alt=\"\" width=\"1920\" height=\"1281\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38923__DSC3658-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38923__DSC3658-qut-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38923__DSC3658-qut-800x534.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38923__DSC3658-qut-1020x681.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38923__DSC3658-qut-1200x801.jpg 1200w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Bueso (left) and Assemblyman Rob Bonta on Sept. 6, 2019 in front of UCSF Benioff Children’s Hospital in Oakland, just before Bueso addresses a crowd of supporters. \u003ccite>(Stephanie Lister/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\"We see this as a first step in revisiting our status as U.S. residents and will be working with our local representatives to find a more permanent solution that guarantees Isabel's life is never put at risk again.\"\u003c/p>\n\u003cp>The House Committee on Oversight and Reform is expected to hold a hearing Wednesday on the Trump administration's policy on humanitarian protections for immigrants in need of medical treatment in the U.S.\u003c/p>\n\u003cp>Bueso plans to travel to Washington, D.C., for the hearing and is expected to testify before lawmakers about the importance of the medical care she and other immigrants receive.\u003c/p>\n\u003cfigure id=\"attachment_11772903\" class=\"wp-caption alignnone\" style=\"max-width: 1920px\">\u003ca href=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2019/09/RS38918__DSC3823-qut.jpg\">\u003cimg class=\"size-full wp-image-11772903\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2019/09/RS38918__DSC3823-qut.jpg\" alt=\"\" width=\"1920\" height=\"1281\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38918__DSC3823-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38918__DSC3823-qut-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38918__DSC3823-qut-800x534.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38918__DSC3823-qut-1020x681.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/RS38918__DSC3823-qut-1200x801.jpg 1200w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Students from the UC Berkeley-UCSF Joint Medical Program hold banners in support of undocumented immigrant patients during Friday's rally at UCSF Benioff Children's Hospital in Oakland. \u003ccite>(Stephanie Lister/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\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>\u003c/p>\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11772813/bay-area-nurses-protest-potential-deportation-of-patient-receiving-lifesaving-treatment","authors":["11258"],"categories":["news_1169","news_8"],"tags":["news_5403","news_20226","news_26536","news_18123"],"featImg":"news_11772896","label":"news"},"news_11772008":{"type":"posts","id":"news_11772008","meta":{"index":"posts_1591205157","site":"news","id":"11772008","score":null,"sort":[1567616300000]},"guestAuthors":[],"slug":"congressional-hearing-to-review-end-of-humanitarian-protections-for-sick-immigrants","title":"Congressional Hearing to Review Agency's End of Humanitarian Protections for Sick Immigrants","publishDate":1567616300,"format":"audio","headTitle":"The California Report | KQED News","labelTerm":{"term":72,"site":"news"},"content":"\u003cp>A Guatemalan woman in the Bay Area who depends on weekly treatment at an Oakland hospital and could die if she’s deported, is planning to speak at an upcoming congressional hearing on the Trump administration’s apparent termination of humanitarian protections for immigrants in need of medical treatment in the U.S.\u003c/p>\n\u003cp>[aside postID=\"news_11771386\" label=\"Related Coverage\"]\u003c/p>\n\u003cp>The House Committee on Oversight and Reform aims to uncover why U.S. Citizenship and Immigration Services told Concord resident \u003ca href=\"https://www.kqed.org/news/11771386/advocating-for-my-own-life-bay-area-woman-getting-lifesaving-care-faces-deportation\" target=\"_blank\" rel=\"noopener\">Maria Isabel Bueso\u003c/a>, 24, and other people requesting an extension of the relief, known as medical deferred action, to leave the U.S. or face deportation.\u003c/p>\n\u003cp>The agency has since backtracked somewhat after public outcry and intense criticism, including a\u003ca href=\"https://desaulnier.house.gov/sites/desaulnier.house.gov/files/2019-08-30%20Congressional%20Letter%20to%20USCIS%20Regarding%20Medical%20Deferred%20Action.pdf\" target=\"_blank\" rel=\"noopener\"> letter\u003c/a> by 100 members of Congress pressing the agency to reverse its policy change.\u003c/p>\n\u003cp>On Monday, USCIS announced it will reopen cases that were pending as of Aug. 7, when it abruptly stopped granting deferred action requests, except for military families.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Congressman Mark DeSaulnier, D-Concord, a member of the oversight committee who requested the hearing, said USCIS officials “should be held accountable” for terminating without public notice their review of roughly 1,000 deferred action requests per year.\u003c/p>\n\u003cp>“I mean, they [USCIS] should be punished for this,” DeSaulnier said.\u003c/p>\n\u003cp>He and Rep. Ayanna Pressley, D-Mass., are drafting a bill that would protect immigrants in a similar situation to Bueso, DeSaulnier said.\u003c/p>\n\u003cp>The congressman has also introduced a private bill that would grant permanent resident status, or a green card, to Bueso, her parents and sister.\u003c/p>\n\u003cp>[pullquote size=\"medium\" align=\"right\" citation=\"Congressman Mark DeSaulnier, D-Concord\"]\"She played by all the rules, she's been here legally, her treatment is actually paid for by private medical insurance.\"[/pullquote]\u003c/p>\n\u003cp>“She played by all the rules, she's been here legally, her treatment is actually paid for by private medical insurance,” DeSaulnier said. “As an American it just makes me so angry that any American would do this to another human being.”\u003c/p>\n\u003cp>Bueso was born with a rare genetic disease that has left her confined to a wheelchair and breathing through a throat device. Doctors in her native Guatemala told Bueso’s parents that she wouldn’t survive past age 10.\u003c/p>\n\u003cp>Bueso came to the U.S. at the age of 7 with her family after doctors in the Bay Area invited her to participate in a clinical trial that eventually led to federal approval of a drug to treat her condition — mucopolysaccharidosis type VI.\u003c/p>\n\u003cp>Bueso, who has since graduated from college at the top of her class and become an advocate for other people with her condition, receives a weekly intravenous infusion of medicine at UCSF Benioff Children’s Hospital. The drug is not available in Guatemala, and her doctor, Paul Harmatz, said Bueso would die if forced to leave the U.S.\u003c/p>\n\u003cp>“It would be literally pulling the plug on a respirator,” Harmatz said.\u003c/p>\n\u003cp>Last month, USCIS denied requests by Bueso and her family to extend deferred action, something that had been granted repeatedly during their 16 years in the U.S. The agency told them to leave the country in 33 days or face removal proceedings.\u003c/p>\n\u003cfigure id=\"attachment_11772069\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11772069\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2019/09/bueso-800x600.jpg\" alt=\"Karla Bueso (left) and her daughter Maria Isabel, 24, at their attorney's offices in San Francisco on Aug. 29, 2019.\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2019/09/bueso-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/bueso-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/bueso-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/bueso-1200x900.jpg 1200w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/bueso.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/bueso-1832x1374.jpg 1832w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/bueso-1376x1032.jpg 1376w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/bueso-1044x783.jpg 1044w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/bueso-632x474.jpg 632w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/bueso-536x402.jpg 536w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Karla Bueso (left) and her daughter Maria Isabel, 24, at their attorney's offices in San Francisco on Aug. 29, 2019. \u003ccite>(Courtesy of the Bueso family)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“You are not authorized to remain in the United States,” said USCIS Field Office Director Richard Valeika in an Aug. 13 letter to Bueso.\u003c/p>\n\u003cp>But the agency now says that it will reopen deferred action cases that were pending when it ended the program.\u003c/p>\n\u003cp>“While limiting USCIS’ role in deferred action is appropriate, USCIS will complete the caseload that was pending on Aug. 7,” said an agency \u003ca href=\"https://www.uscis.gov/news/alerts/uscis-re-opens-previously-pending-deferral-requests\" target=\"_blank\" rel=\"noopener\">statement\u003c/a>.\u003c/p>\n\u003cp>USCIS has not returned requests for comment on how many cases the agency expects to reopen, or whether it might consider any new requests.\u003c/p>\n\u003cp>[pullquote size=\"medium\" align=\"right\" citation=\"Paul Harmatz, doctor at UCSF Benioff Children’s Hospital, regarding the possible deportation of Maria Isabel Bueso\"]\"It would be literally pulling the plug on a respirator.\"[/pullquote]\u003c/p>\n\u003cp>Last week, a USCIS spokeswoman disputed the notion that the program was ending because she said U.S. Immigration and Customs Enforcement — the agency in charge of deportations — would be handling those requests instead.\u003c/p>\n\u003cp>But ICE did not return requests for comment on what procedure, if any, has been put in place for deferred action applications, and on Tuesday, an ICE spokesman referred all questions about the program to USCIS.\u003c/p>\n\u003cp>DeSaulnier said that when his staff initially reached out to ICE with similar questions, agency officials said they were \"unaware\" USCIS had changed its policy.\u003c/p>\n\u003cp>However, ICE can process deferred action requests, according to an immigration attorney and a former employee at the Department of Homeland Security.\u003c/p>\n\u003cp>In a statement, the Bueso family called the news of USCIS reopening cases \"encouraging.\"\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"We see this as a first step in revisiting our status as U.S. residents and will be working with our local representatives to find a more permanent solution that guarantees Isabel's life is never put at risk again,\" they said in the statement.\u003c/p>\n\n","blocks":[],"excerpt":"A Bay Area woman who may die if she’s deported is planning to speak at the upcoming hearing by the House Committee on Oversight and Reform.","status":"publish","parent":0,"modified":1571864557,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":29,"wordCount":883},"headData":{"title":"Congressional Hearing to Review Agency's End of Humanitarian Protections for Sick Immigrants | KQED","description":"A Bay Area woman who may die if she’s deported is planning to speak at the upcoming hearing by the House Committee on Oversight and Reform.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"11772008 https://ww2.kqed.org/news/?p=11772008","disqusUrl":"https://ww2.kqed.org/news/2019/09/04/congressional-hearing-to-review-end-of-humanitarian-protections-for-sick-immigrants/","disqusTitle":"Congressional Hearing to Review Agency's End of Humanitarian Protections for Sick Immigrants","audioUrl":"https://www.kqed.org/.stream/anon/radio/tcr/2019/09/297860RomeroDeportation.mp3","audioTrackLength":87,"path":"/news/11772008/congressional-hearing-to-review-end-of-humanitarian-protections-for-sick-immigrants","audioDuration":87000,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>A Guatemalan woman in the Bay Area who depends on weekly treatment at an Oakland hospital and could die if she’s deported, is planning to speak at an upcoming congressional hearing on the Trump administration’s apparent termination of humanitarian protections for immigrants in need of medical treatment in the U.S.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"aside","attributes":{"named":{"postid":"news_11771386","label":"Related Coverage "},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The House Committee on Oversight and Reform aims to uncover why U.S. Citizenship and Immigration Services told Concord resident \u003ca href=\"https://www.kqed.org/news/11771386/advocating-for-my-own-life-bay-area-woman-getting-lifesaving-care-faces-deportation\" target=\"_blank\" rel=\"noopener\">Maria Isabel Bueso\u003c/a>, 24, and other people requesting an extension of the relief, known as medical deferred action, to leave the U.S. or face deportation.\u003c/p>\n\u003cp>The agency has since backtracked somewhat after public outcry and intense criticism, including a\u003ca href=\"https://desaulnier.house.gov/sites/desaulnier.house.gov/files/2019-08-30%20Congressional%20Letter%20to%20USCIS%20Regarding%20Medical%20Deferred%20Action.pdf\" target=\"_blank\" rel=\"noopener\"> letter\u003c/a> by 100 members of Congress pressing the agency to reverse its policy change.\u003c/p>\n\u003cp>On Monday, USCIS announced it will reopen cases that were pending as of Aug. 7, when it abruptly stopped granting deferred action requests, except for military families.\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>Congressman Mark DeSaulnier, D-Concord, a member of the oversight committee who requested the hearing, said USCIS officials “should be held accountable” for terminating without public notice their review of roughly 1,000 deferred action requests per year.\u003c/p>\n\u003cp>“I mean, they [USCIS] should be punished for this,” DeSaulnier said.\u003c/p>\n\u003cp>He and Rep. Ayanna Pressley, D-Mass., are drafting a bill that would protect immigrants in a similar situation to Bueso, DeSaulnier said.\u003c/p>\n\u003cp>The congressman has also introduced a private bill that would grant permanent resident status, or a green card, to Bueso, her parents and sister.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"\"She played by all the rules, she's been here legally, her treatment is actually paid for by private medical insurance.\"","name":"pullquote","attributes":{"named":{"size":"medium","align":"right","citation":"Congressman Mark DeSaulnier, D-Concord","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“She played by all the rules, she's been here legally, her treatment is actually paid for by private medical insurance,” DeSaulnier said. “As an American it just makes me so angry that any American would do this to another human being.”\u003c/p>\n\u003cp>Bueso was born with a rare genetic disease that has left her confined to a wheelchair and breathing through a throat device. Doctors in her native Guatemala told Bueso’s parents that she wouldn’t survive past age 10.\u003c/p>\n\u003cp>Bueso came to the U.S. at the age of 7 with her family after doctors in the Bay Area invited her to participate in a clinical trial that eventually led to federal approval of a drug to treat her condition — mucopolysaccharidosis type VI.\u003c/p>\n\u003cp>Bueso, who has since graduated from college at the top of her class and become an advocate for other people with her condition, receives a weekly intravenous infusion of medicine at UCSF Benioff Children’s Hospital. The drug is not available in Guatemala, and her doctor, Paul Harmatz, said Bueso would die if forced to leave the U.S.\u003c/p>\n\u003cp>“It would be literally pulling the plug on a respirator,” Harmatz said.\u003c/p>\n\u003cp>Last month, USCIS denied requests by Bueso and her family to extend deferred action, something that had been granted repeatedly during their 16 years in the U.S. The agency told them to leave the country in 33 days or face removal proceedings.\u003c/p>\n\u003cfigure id=\"attachment_11772069\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-11772069\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2019/09/bueso-800x600.jpg\" alt=\"Karla Bueso (left) and her daughter Maria Isabel, 24, at their attorney's offices in San Francisco on Aug. 29, 2019.\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2019/09/bueso-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/bueso-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/bueso-1020x765.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/bueso-1200x900.jpg 1200w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/bueso.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/bueso-1832x1374.jpg 1832w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/bueso-1376x1032.jpg 1376w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/bueso-1044x783.jpg 1044w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/bueso-632x474.jpg 632w, https://ww2.kqed.org/app/uploads/sites/10/2019/09/bueso-536x402.jpg 536w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Karla Bueso (left) and her daughter Maria Isabel, 24, at their attorney's offices in San Francisco on Aug. 29, 2019. \u003ccite>(Courtesy of the Bueso family)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“You are not authorized to remain in the United States,” said USCIS Field Office Director Richard Valeika in an Aug. 13 letter to Bueso.\u003c/p>\n\u003cp>But the agency now says that it will reopen deferred action cases that were pending when it ended the program.\u003c/p>\n\u003cp>“While limiting USCIS’ role in deferred action is appropriate, USCIS will complete the caseload that was pending on Aug. 7,” said an agency \u003ca href=\"https://www.uscis.gov/news/alerts/uscis-re-opens-previously-pending-deferral-requests\" target=\"_blank\" rel=\"noopener\">statement\u003c/a>.\u003c/p>\n\u003cp>USCIS has not returned requests for comment on how many cases the agency expects to reopen, or whether it might consider any new requests.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"\"It would be literally pulling the plug on a respirator.\"","name":"pullquote","attributes":{"named":{"size":"medium","align":"right","citation":"Paul Harmatz, doctor at UCSF Benioff Children’s Hospital, regarding the possible deportation of Maria Isabel Bueso","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Last week, a USCIS spokeswoman disputed the notion that the program was ending because she said U.S. Immigration and Customs Enforcement — the agency in charge of deportations — would be handling those requests instead.\u003c/p>\n\u003cp>But ICE did not return requests for comment on what procedure, if any, has been put in place for deferred action applications, and on Tuesday, an ICE spokesman referred all questions about the program to USCIS.\u003c/p>\n\u003cp>DeSaulnier said that when his staff initially reached out to ICE with similar questions, agency officials said they were \"unaware\" USCIS had changed its policy.\u003c/p>\n\u003cp>However, ICE can process deferred action requests, according to an immigration attorney and a former employee at the Department of Homeland Security.\u003c/p>\n\u003cp>In a statement, the Bueso family called the news of USCIS reopening cases \"encouraging.\"\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"We see this as a first step in revisiting our status as U.S. residents and will be working with our local representatives to find a more permanent solution that guarantees Isabel's life is never put at risk again,\" they said in the statement.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11772008/congressional-hearing-to-review-end-of-humanitarian-protections-for-sick-immigrants","authors":["8659"],"programs":["news_72"],"categories":["news_1169","news_6188","news_8"],"tags":["news_26536","news_21027","news_17041","news_20529","news_22530","news_26537"],"featImg":"news_11782098","label":"news_72"},"news_11771386":{"type":"posts","id":"news_11771386","meta":{"index":"posts_1591205157","site":"news","id":"11771386","score":null,"sort":[1567205186000]},"guestAuthors":[],"slug":"advocating-for-my-own-life-bay-area-woman-getting-lifesaving-care-faces-deportation","title":"Feds to Reconsider Case of Bay Area Woman Getting Lifesaving Treatment Who Faces Deportation","publishDate":1567205186,"format":"audio","headTitle":"The California Report | KQED News","labelTerm":{"term":72,"site":"news"},"content":"\u003cp>\u003cem>Updated Tuesday at 10:35 a.m.\u003c/em>\u003c/p>\n\u003cp>Maria Isabel Bueso has overcome many challenges as a result of the debilitating genetic disease she was born with that eventually left her confined to a wheelchair, breathing through a device and reliant upon weekly treatments to survive.\u003c/p>\n\u003cp>She trained to become a dance teacher and now is an instructor, and she graduated summa cum laude from California State University, East Bay — where she set up a scholarship fund for students with disabilities. She also advocates for people with her disease and other rare illnesses, traveling to Washington, D.C., to lobby for medical research.\u003c/p>\n\u003cp>Now, Bueso is fighting for her life once more.\u003c/p>\n\u003cp>Immigration authorities previously told her and her family to leave the U.S. by mid-September — or face deportation to her home country of Guatemala.\u003c/p>\n\u003cp>On Monday, USCIS \u003ca href=\"https://www.uscis.gov/news/alerts/uscis-re-opens-previously-pending-deferral-requests\" target=\"_blank\" rel=\"noopener\">announced\u003c/a> the agency will reopen the pending cases of immigrants, often with severe medical conditions who were denied humanitarian relief to stay in the country.\u003c/p>\n\u003cp>In a statement, the Bueso family called the news of USCIS reconsidering cases, \"encouraging.\"\u003c/p>\n\u003cp>\"We see this as a first step in revisiting our status as U.S. residents and will be working with out local representatives to find a more permanent solution that guarantees Isabel's life is never put at risk again,\" according to the statement.\u003c/p>\n\u003cp>USCIS' announcement comes as KQED and other media outlets reported her case. Members of Congress from the Bay Area also joined roughly 100 colleagues demanding answers about the agency’s decision.\u003c/p>\n\u003cp>But it is still unclear what will happen to the future of the medical deferred action program, which allowed Bueso and her family to stay in the U.S.\u003c/p>\n\u003cp>“I feel like I'm advocating for my own life,” Bueso, 24, of Concord, said last week.\u003c/p>\n\u003cp>\u003cstrong>'Pulling the Plug on a Respirator'\u003c/strong>\u003c/p>\n\u003cp>Bueso and her family have lived in the U.S. under \"deferred action,\" a form of temporary humanitarian relief that they renewed every few years.\u003c/p>\n\u003cp>[pullquote size='small' align='right' citation='Maria Isabel Bueso, 24, of Concord']'My mom and I, we started crying together. I started shaking. ... It was just a shock for me because I depend on that treatment.'[/pullquote]When she was 7, doctors in the Bay Area invited Bueso to participate in a clinical trial for a new drug to treat her condition — mucopolysaccharidosis type VI. In 2003, her family moved to California from Guatemala. The clinical trial eventually led to federal approval for the treatment.\u003c/p>\n\u003cp>People with Bueso’s disease lack an enzyme that allows the body to break down certain sugars. The genetic mutation leads to very short stature, because the skeletal system cannot develop normally, as well as pulmonary, heart and other problems.\u003c/p>\n\u003cp>Every week, Bueso receives an intravenous infusion of medicine at a hospital in Oakland. Her doctor said the treatments have extended her life many years beyond what Guatemalan physicians had predicted when Bueso was a child.\u003c/p>\n\u003cp>Without the weekly treatment replenishing the missing enzyme, Bueso would die in six to 12 months, said Dr. Paul Harmatz, a pediatrician at UCSF Benioff Children's Hospital and Bueso's physician.\u003c/p>\n\u003cp>It seemed Bueso had finally reached a sense of stability until mid-August, when she got a letter from U.S. Citizenship and Immigration Services (USCIS) informing her she was no longer authorized to stay in the country and had 33 days to leave or face deportation. The medicine she needs to survive is not available in Guatemala.\u003c/p>\n\u003cp>“It’s devastating,” said Harmatz, who led the clinical trial Bueso entered 16 years ago. “I would never even contemplate stopping enzyme therapy on a patient with this type of disease. It would be literally pulling the plug on a respirator.”\u003c/p>\n\u003cp>Bueso was getting her weekly IV infusion at UCSF when she learned of the initial news.\u003c/p>\n\u003cp>“My mom and I, we started crying together. I started shaking. I was pale,” said Bueso. “It was just a shock for me because I depend on that treatment.”\u003c/p>\n\u003cp>\u003cstrong>'A Hunt to Restrict Immigration'\u003c/strong>\u003c/p>\n\u003cp>In early August, USCIS stopped considering requests for medical deferred action. The only exceptions will be for military families, said an agency spokeswoman who declined to be identified.\u003c/p>\n\u003cp>[pullquote size='small' align='right' citation='Dr. Paul Harmatz, a UCSF pediatrician who led the trial in which Maria Isabel Bueso participated']'I would never even contemplate stopping enzyme therapy on a patient with this type of disease. It would be literally pulling the plug on a respirator.'[/pullquote]\u003c/p>\n\u003cp>The spokeswoman previously disputed that the program was ending altogether, saying that U.S. Immigration and Customs Enforcement (ICE) — the agency in charge of deportations — would now be handling medical deferred action requests instead.\u003c/p>\n\u003cp>Bueso’s attorney, Martin Lawler, said ICE had not yet provided a way to apply for protection from deportation, and USCIS had not provided the family any more information as of last week.\u003c/p>\n\u003cp>“There's no reason not to extend the status of people who are here who will basically die without the medicines that we provide them,\" Lawler said about the initial notice Bueso and her family received from immigration. \"They have private medical insurance, they are no burden to the taxpayer. Isabel's father works and supports the family.”\u003c/p>\n\u003cp>The policy changes come as part of a series of new rules and interpretations of regulations by the Trump administration that are aimed at restricting new immigration and denying protections to immigrants already in the country, advocates say.\u003c/p>\n\u003cp>Such recent policies include penalizing green card applicants who use certain public benefits, and making it much harder for thousands of migrants at the U.S.-Mexico border to gain asylum protections. Many of these executive actions are being challenged in the courts.\u003c/p>\n\u003cp>[aside tag='migrants' label='Related Coverage']“This latest decision is yet another indication that the Trump administration is seeking to close off all avenues of relief for people here in the United States,” said Aaron Reichlin-Melnick, a policy analyst with the American Immigration Council. “There seems to be no guiding principle behind all of this except for a hunt to restrict immigration in as many ways as possible.”\u003c/p>\n\u003cp>Rep. Judy Chu (D-Monterey Park) denounced the Trump administration’s policy change.\u003c/p>\n\u003cp>“It's clear that this administration will not stop looking for any opportunity to wage war on immigrants,” said Chu. “These families deserve the certainty of knowing that they can stay together and in one place while seeking treatment for diseases like cancer, HIV and cerebral palsy.”\u003c/p>\n\u003cp>ICE did not return requests for comment on how people can apply for medical deferred action, or why Bueso’s denial letter failed to mention she could seek a review of her case with the agency.\u003c/p>\n\u003cp>“ICE reviews each case on its own merits and exercises appropriate discretion after reviewing all the facts involved,” said Paul Prince, an agency spokesman.\u003c/p>\n\u003cp>Officials with USCIS say they receive about 1,000 non-military requests a year for deferred action on humanitarian grounds. Many are related to family support or medical issues, and most are denied, according to USCIS.\u003c/p>\n\u003cp>It is unclear how many immigrants have received denial notices like Bueso’s. But attorneys in multiple states reported getting similar rejection letters from USCIS for pending applications, some of which were submitted months before the initial policy change, according to the American Immigration Lawyers Association.\u003c/p>\n\u003cp>Sen. Kamala Harris and Rep. Mark DeSaulnier, whose district includes Concord, where the Bueso family has lived for six years, urged the Department of Homeland Security to grant an extension of the medical deferred action protections (Homeland Security is the parent agency that includes USCIS and ICE).\u003c/p>\n\u003cfigure id=\"attachment_11771439\" class=\"wp-caption aligncenter\" style=\"max-width: 1920px\">\u003cimg class=\"size-full wp-image-11771439\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2019/08/RS38885_IMG_1325-qut.jpg\" alt=\"\" width=\"1920\" height=\"1440\">\u003cfigcaption class=\"wp-caption-text\">Karla Barrera and her daughter, Maria Isabel Bueso, at their attorney's offices in San Francisco on Aug. 29, 2019. \"I haven't slept for days,\" said Barrera, 50, who fears her daughter could lose vital medical treatment in the U.S.\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>'We Made a Life Here'\u003c/strong>\u003c/p>\n\u003cp>[aside tag='immigration' label='More Coverage']USCIS also told Bueso’s mother, father and older sister to leave the U.S. Bueso’s father, Alberto, works in sales at an import-export company, while her sister, Ana Lucia, is a preschool teacher.\u003c/p>\n\u003cp>“We made a life here. We left family, careers, friends behind in Guatemala for Maria Isabel,” said Bueso’s mother Karla Barrera, 50. “Getting a letter telling us that we have to leave the country in 33 days from the date of the letter is shocking. I’m still processing it.”\u003c/p>\n\u003cp>Bueso’s participation in the years-long clinical trial was important in getting the drug, called Naglazyme, approved by the U.S. Food and Drug Administration, said Harmatz, who led the trial.\u003c/p>\n\u003cp>“There will be a devastating loss to our community,” said Harmatz. “It will be a tragic outcome for Isabel, after all she's gone through, taking care of her disease.”\u003c/p>\n\u003cp>Bueso remembers watching as babies with her condition, also known as MPS VI, were given Naglazyme to help stop the disease’s progression early on and avoid some of the health issues she struggles with daily.\u003c/p>\n\u003cp>“I felt really proud that I could help other people,” said Bueso.\u003c/p>\n\u003cp>Bueso and her family say if they are placed in deportation proceedings, they will fight their case as best they can. But they have not given up hope that the government will reconsider.\u003c/p>\n\u003cp>“I have just been praying a lot and telling people to pray for me,” she said.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n","blocks":[],"excerpt":"\"It would be literally pulling the plug on a respirator,” said Oakland physician Dr. Paul Harmatz, who has treated the Guatemalan woman since she was a child.","status":"publish","parent":0,"modified":1567816641,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":48,"wordCount":1642},"headData":{"title":"Feds to Reconsider Case of Bay Area Woman Getting Lifesaving Treatment Who Faces Deportation | KQED","description":""It would be literally pulling the plug on a respirator,” said Oakland physician Dr. Paul Harmatz, who has treated the Guatemalan woman since she was a child.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"11771386 https://ww2.kqed.org/news/?p=11771386","disqusUrl":"https://ww2.kqed.org/news/2019/08/30/advocating-for-my-own-life-bay-area-woman-getting-lifesaving-care-faces-deportation/","disqusTitle":"Feds to Reconsider Case of Bay Area Woman Getting Lifesaving Treatment Who Faces Deportation","audioUrl":"https://www.kqed.org/.stream/anon/radio/tcr/2019/08/RomeroSickImmigrantDeportation.mp3","audioTrackLength":122,"path":"/news/11771386/advocating-for-my-own-life-bay-area-woman-getting-lifesaving-care-faces-deportation","audioDuration":122000,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>\u003cem>Updated Tuesday at 10:35 a.m.\u003c/em>\u003c/p>\n\u003cp>Maria Isabel Bueso has overcome many challenges as a result of the debilitating genetic disease she was born with that eventually left her confined to a wheelchair, breathing through a device and reliant upon weekly treatments to survive.\u003c/p>\n\u003cp>She trained to become a dance teacher and now is an instructor, and she graduated summa cum laude from California State University, East Bay — where she set up a scholarship fund for students with disabilities. She also advocates for people with her disease and other rare illnesses, traveling to Washington, D.C., to lobby for medical research.\u003c/p>\n\u003cp>Now, Bueso is fighting for her life once more.\u003c/p>\n\u003cp>Immigration authorities previously told her and her family to leave the U.S. by mid-September — or face deportation to her home country of Guatemala.\u003c/p>\n\u003cp>On Monday, USCIS \u003ca href=\"https://www.uscis.gov/news/alerts/uscis-re-opens-previously-pending-deferral-requests\" target=\"_blank\" rel=\"noopener\">announced\u003c/a> the agency will reopen the pending cases of immigrants, often with severe medical conditions who were denied humanitarian relief to stay in the country.\u003c/p>\n\u003cp>In a statement, the Bueso family called the news of USCIS reconsidering cases, \"encouraging.\"\u003c/p>\n\u003cp>\"We see this as a first step in revisiting our status as U.S. residents and will be working with out local representatives to find a more permanent solution that guarantees Isabel's life is never put at risk again,\" according to the statement.\u003c/p>\n\u003cp>USCIS' announcement comes as KQED and other media outlets reported her case. Members of Congress from the Bay Area also joined roughly 100 colleagues demanding answers about the agency’s decision.\u003c/p>\n\u003cp>But it is still unclear what will happen to the future of the medical deferred action program, which allowed Bueso and her family to stay in the U.S.\u003c/p>\n\u003cp>“I feel like I'm advocating for my own life,” Bueso, 24, of Concord, said last week.\u003c/p>\n\u003cp>\u003cstrong>'Pulling the Plug on a Respirator'\u003c/strong>\u003c/p>\n\u003cp>Bueso and her family have lived in the U.S. under \"deferred action,\" a form of temporary humanitarian relief that they renewed every few years.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"'My mom and I, we started crying together. I started shaking. ... It was just a shock for me because I depend on that treatment.'","name":"pullquote","attributes":{"named":{"size":"small","align":"right","citation":"Maria Isabel Bueso, 24, of Concord","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>When she was 7, doctors in the Bay Area invited Bueso to participate in a clinical trial for a new drug to treat her condition — mucopolysaccharidosis type VI. In 2003, her family moved to California from Guatemala. The clinical trial eventually led to federal approval for the treatment.\u003c/p>\n\u003cp>People with Bueso’s disease lack an enzyme that allows the body to break down certain sugars. The genetic mutation leads to very short stature, because the skeletal system cannot develop normally, as well as pulmonary, heart and other problems.\u003c/p>\n\u003cp>Every week, Bueso receives an intravenous infusion of medicine at a hospital in Oakland. Her doctor said the treatments have extended her life many years beyond what Guatemalan physicians had predicted when Bueso was a child.\u003c/p>\n\u003cp>Without the weekly treatment replenishing the missing enzyme, Bueso would die in six to 12 months, said Dr. Paul Harmatz, a pediatrician at UCSF Benioff Children's Hospital and Bueso's physician.\u003c/p>\n\u003cp>It seemed Bueso had finally reached a sense of stability until mid-August, when she got a letter from U.S. Citizenship and Immigration Services (USCIS) informing her she was no longer authorized to stay in the country and had 33 days to leave or face deportation. The medicine she needs to survive is not available in Guatemala.\u003c/p>\n\u003cp>“It’s devastating,” said Harmatz, who led the clinical trial Bueso entered 16 years ago. “I would never even contemplate stopping enzyme therapy on a patient with this type of disease. It would be literally pulling the plug on a respirator.”\u003c/p>\n\u003cp>Bueso was getting her weekly IV infusion at UCSF when she learned of the initial news.\u003c/p>\n\u003cp>“My mom and I, we started crying together. I started shaking. I was pale,” said Bueso. “It was just a shock for me because I depend on that treatment.”\u003c/p>\n\u003cp>\u003cstrong>'A Hunt to Restrict Immigration'\u003c/strong>\u003c/p>\n\u003cp>In early August, USCIS stopped considering requests for medical deferred action. The only exceptions will be for military families, said an agency spokeswoman who declined to be identified.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"'I would never even contemplate stopping enzyme therapy on a patient with this type of disease. It would be literally pulling the plug on a respirator.'","name":"pullquote","attributes":{"named":{"size":"small","align":"right","citation":"Dr. Paul Harmatz, a UCSF pediatrician who led the trial in which Maria Isabel Bueso participated","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The spokeswoman previously disputed that the program was ending altogether, saying that U.S. Immigration and Customs Enforcement (ICE) — the agency in charge of deportations — would now be handling medical deferred action requests instead.\u003c/p>\n\u003cp>Bueso’s attorney, Martin Lawler, said ICE had not yet provided a way to apply for protection from deportation, and USCIS had not provided the family any more information as of last week.\u003c/p>\n\u003cp>“There's no reason not to extend the status of people who are here who will basically die without the medicines that we provide them,\" Lawler said about the initial notice Bueso and her family received from immigration. \"They have private medical insurance, they are no burden to the taxpayer. Isabel's father works and supports the family.”\u003c/p>\n\u003cp>The policy changes come as part of a series of new rules and interpretations of regulations by the Trump administration that are aimed at restricting new immigration and denying protections to immigrants already in the country, advocates say.\u003c/p>\n\u003cp>Such recent policies include penalizing green card applicants who use certain public benefits, and making it much harder for thousands of migrants at the U.S.-Mexico border to gain asylum protections. Many of these executive actions are being challenged in the courts.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"aside","attributes":{"named":{"tag":"migrants","label":"Related Coverage "},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>“This latest decision is yet another indication that the Trump administration is seeking to close off all avenues of relief for people here in the United States,” said Aaron Reichlin-Melnick, a policy analyst with the American Immigration Council. “There seems to be no guiding principle behind all of this except for a hunt to restrict immigration in as many ways as possible.”\u003c/p>\n\u003cp>Rep. Judy Chu (D-Monterey Park) denounced the Trump administration’s policy change.\u003c/p>\n\u003cp>“It's clear that this administration will not stop looking for any opportunity to wage war on immigrants,” said Chu. “These families deserve the certainty of knowing that they can stay together and in one place while seeking treatment for diseases like cancer, HIV and cerebral palsy.”\u003c/p>\n\u003cp>ICE did not return requests for comment on how people can apply for medical deferred action, or why Bueso’s denial letter failed to mention she could seek a review of her case with the agency.\u003c/p>\n\u003cp>“ICE reviews each case on its own merits and exercises appropriate discretion after reviewing all the facts involved,” said Paul Prince, an agency spokesman.\u003c/p>\n\u003cp>Officials with USCIS say they receive about 1,000 non-military requests a year for deferred action on humanitarian grounds. Many are related to family support or medical issues, and most are denied, according to USCIS.\u003c/p>\n\u003cp>It is unclear how many immigrants have received denial notices like Bueso’s. But attorneys in multiple states reported getting similar rejection letters from USCIS for pending applications, some of which were submitted months before the initial policy change, according to the American Immigration Lawyers Association.\u003c/p>\n\u003cp>Sen. Kamala Harris and Rep. Mark DeSaulnier, whose district includes Concord, where the Bueso family has lived for six years, urged the Department of Homeland Security to grant an extension of the medical deferred action protections (Homeland Security is the parent agency that includes USCIS and ICE).\u003c/p>\n\u003cfigure id=\"attachment_11771439\" class=\"wp-caption aligncenter\" style=\"max-width: 1920px\">\u003cimg class=\"size-full wp-image-11771439\" src=\"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2019/08/RS38885_IMG_1325-qut.jpg\" alt=\"\" width=\"1920\" height=\"1440\">\u003cfigcaption class=\"wp-caption-text\">Karla Barrera and her daughter, Maria Isabel Bueso, at their attorney's offices in San Francisco on Aug. 29, 2019. \"I haven't slept for days,\" said Barrera, 50, who fears her daughter could lose vital medical treatment in the U.S.\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>'We Made a Life Here'\u003c/strong>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"aside","attributes":{"named":{"tag":"immigration","label":"More Coverage "},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>USCIS also told Bueso’s mother, father and older sister to leave the U.S. Bueso’s father, Alberto, works in sales at an import-export company, while her sister, Ana Lucia, is a preschool teacher.\u003c/p>\n\u003cp>“We made a life here. We left family, careers, friends behind in Guatemala for Maria Isabel,” said Bueso’s mother Karla Barrera, 50. “Getting a letter telling us that we have to leave the country in 33 days from the date of the letter is shocking. I’m still processing it.”\u003c/p>\n\u003cp>Bueso’s participation in the years-long clinical trial was important in getting the drug, called Naglazyme, approved by the U.S. Food and Drug Administration, said Harmatz, who led the trial.\u003c/p>\n\u003cp>“There will be a devastating loss to our community,” said Harmatz. “It will be a tragic outcome for Isabel, after all she's gone through, taking care of her disease.”\u003c/p>\n\u003cp>Bueso remembers watching as babies with her condition, also known as MPS VI, were given Naglazyme to help stop the disease’s progression early on and avoid some of the health issues she struggles with daily.\u003c/p>\n\u003cp>“I felt really proud that I could help other people,” said Bueso.\u003c/p>\n\u003cp>Bueso and her family say if they are placed in deportation proceedings, they will fight their case as best they can. But they have not given up hope that the government will reconsider.\u003c/p>\n\u003cp>“I have just been praying a lot and telling people to pray for me,” she said.\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>\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\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/news/11771386/advocating-for-my-own-life-bay-area-woman-getting-lifesaving-care-faces-deportation","authors":["8659"],"programs":["news_72"],"categories":["news_1169","news_8"],"tags":["news_26536","news_5239","news_19542","news_21027","news_20202","news_23612","news_26537"],"featImg":"news_11772069","label":"news_72"}},"programsReducer":{"possible":{"id":"possible","title":"Possible","info":"Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. 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And you join us on the journey to find the answers.","imageSrc":"https://ww2.kqed.org/news/wp-content/uploads/sites/10/powerpress/1440_0017_BayCurious_iTunesTile_01.jpg","imageAlt":"\"KQED Bay Curious","officialWebsiteLink":"/news/series/baycurious","meta":{"site":"news","source":"kqed","order":"4"},"link":"/podcasts/baycurious","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/bay-curious/id1172473406","npr":"https://www.npr.org/podcasts/500557090/bay-curious","rss":"https://ww2.kqed.org/news/category/bay-curious-podcast/feed/podcast","google":"https://podcasts.google.com/feed/aHR0cHM6Ly93dzIua3FlZC5vcmcvbmV3cy9jYXRlZ29yeS9iYXktY3VyaW91cy1wb2RjYXN0L2ZlZWQvcG9kY2FzdA","stitcher":"https://www.stitcher.com/podcast/kqed/bay-curious","spotify":"https://open.spotify.com/show/6O76IdmhixfijmhTZLIJ8k"}},"bbc-world-service":{"id":"bbc-world-service","title":"BBC World Service","info":"The day's top stories from BBC News compiled twice daily in the week, once at weekends.","airtime":"MON-FRI 9pm-10pm, TUE-FRI 1am-2am","imageSrc":"https://ww2.kqed.org/app/uploads/2021/10/BBC_1400.jpg","officialWebsiteLink":"https://www.bbc.co.uk/sounds/play/live:bbc_world_service","meta":{"site":"news","source":"BBC World Service"},"link":"/radio/program/bbc-world-service","subscribe":{"apple":"https://itunes.apple.com/us/podcast/global-news-podcast/id135067274?mt=2","tuneIn":"https://tunein.com/radio/BBC-World-Service-p455581/","rss":"https://podcasts.files.bbci.co.uk/p02nq0gn.rss"}},"code-switch-life-kit":{"id":"code-switch-life-kit","title":"Code Switch / Life Kit","info":"\u003cem>Code Switch\u003c/em>, which listeners will hear in the first part of the hour, has fearless and much-needed conversations about race. 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/2021/12/CodeSwitchLifeKit_StationGraphics_300x300EmailGraphic.png","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. 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