“The first thing they did, of course, was deny it,” he says.
But the real problem, once he did get approval, was the price tag. Each pill costs $1,000.
“The first quote I got was $140,000, and I would be responsible for $14,000 of it,” he remembers.
Lawrence is a retired middle school teacher. He lives on Social Security. There was just no way he could come up with $14,000 on his own.
“I went to everybody I knew of,” he says, “and fussed and fumed and all that stuff.”
Eventually, Lawrence got financial aid from a nonprofit to help him cover his out-of-pocket costs. Every morning at 10 a.m., he stood over his bathroom sink and swallowed two capsules.
“I’d go to take my pills and I’d go, there’s one thousand,” he says. “And there’s another thousand.”
Health advocates hear scenarios like this all the time from patients with a range of chronic conditions, including Hepatitis C, HIV, multiple sclerosis and rheumatoid arthritis.
“We’ve heard stories of people who’ve emptied their retirement savings to cover their drug needs,” said Betsy Imholz, special projects director at Consumers Union, an advocacy group. “It’s a really frightening, Wild West situation for people who need these specialty drugs.”
She and other advocates took their concerns to Covered California, the agency that implements the Affordable Care Act in the state. Advocates argued there should be a limit on how much consumers have to pay for these drugs.
The agency agreed, and today the board will vote on a proposal that would cap the monthly out-of-pocket costs for specialty drugs. Under most plans, people would have to pay only $250 per prescription, per month. Some silver plans would have $150-caps, while bronze plans would have caps of $500.
UPDATE: Covered California's board approved these caps at Thursday's meeting. Health plans must now incorporate them into their benefits for 2016.
"We are putting California consumers first," said Peter Lee, Covered California's executive director. "These new policies strike a balance between ensuring Covered California consumers can afford the medication they need to treat chronic and life-threatening conditions while keeping premiums affordable for all.”
This policy will apply only to the 2.2 million people who buy coverage on the individual market. A bill currently being considered in the state's Legislature would extend that protection to many people with employer-based plans as well.
Several other states are also considering similar caps, some as low as $100.
“We’re better than most," Imholz says, "but not the absolute top of the heap as we usually are."
Health insurance companies involved in Covered California meetings tried to negotiate for higher caps, closer to $500 for all plans, Imholz says. Still, she added, insurers did support the overall idea of caps.
Nicole Kasabian Evans of the California Association of Health Plans says insurers see a correlation between the cost of a drug and adherence - patients who can't afford what they're prescribed will sometimes split pills, or not take them at all.
“If you ultimately have to go back and take a second round, because you didn't take it right the first time, or you never took it and you develop a more serious health condition, it's not good for the consumer, and it costs the health care system more money,” she says.
Kasabian Evans says the real root of the problem lies with the pharmaceutical companies that set the drug prices. Last year, more than half a million patients in the U.S. had medication costs that exceeded $50,000, according to a recent report from Express Scripts, a company that manages prescription benefits
“This is unsustainable,” she says, “and it’s going to have a major impact on the price of health care.”
Even if insurers lower the co-pays for patients who take specialty drugs, the price the insurers pay stays the same. Eventually, they say the only way to balance the books will be to raise monthly premiums for everyone else.
“So if we really want to make sure consumers can afford prescription drug coverage, then we need to deal with the root price of the drug,” Kasabian Evans says.
Drug companies routinely defend their drug prices, citing the lengthy and expensive process of developing new drugs, and the many failed attempts that often precede successes.
The debates aren’t helping Mikkel Lawrence right now. His battle over Hepatitis C drugs continues. Turns out that $140,000 regimen he took last year didn’t work. He fell into the 5 percent of patients who don’t respond. But now he’s caught wind of a new drug that’s coming down the pipeline. And he’s already drafting a series of emails and letters to get it approved and to find the money to pay for it.
“As soon as they’re out, I’m taking them,” he said.
