RENEE MONTAGNE, HOST:
Every day for six months last year, Mikkel Lawrence stood over his bathroom sink in Northern California and took two pills that were very expensive.
MIKKEL LAWRENCE: You know, I'd go to take my pills, and I'd go, oh, there's 1,000 (laughter). There's another one.
MONTAGNE: At that price, he almost did not get to take the drugs at all. Health officials here in California are now working to help people facing astronomic bills for drugs. From member station KQED in San Francisco, April Dembosky reports.
APRIL DEMBOSKY, BYLINE: Sometimes, Mikkel Lawrence gets up in the morning, eats breakfast, and then heads straight back to bed for a nap.
LAWRENCE: Really bad tired spells, right. It's like, you have to go to sleep.
DEMBOSKY: This is one of the symptoms of hepatitis C, a virus that can damage the liver.
LAWRENCE: Yeah, it takes away probably three or four hours of my waking day.
DEMBOSKY: There's also an increased risk of liver cancer or liver failure. So when Lawrence heard there was a new drug regimen that could cure his disease, he went straight to his insurance company.
LAWRENCE: So the first thing they did, of course, was deny it.
DEMBOSKY: They did eventually approve it. But then the real problem was the price tag. Each pill costs $1,000. For Lawrence, that added up to a pretty hefty copay.
LAWRENCE: The first quote I got was $140,000, and I would be responsible for $14,000.
DEMBOSKY: Lawrence is 71 and a retired middle school teacher. He lives on social security. There was just no way he could come up with 14 grand on his own.
So what did you do?
LAWRENCE: (Laughter) Went to everybody I knew of and fussed and fumed and all that stuff.
BETSY IMHOLZ: It's a really frightening, wild West kind of situation for people that need these specialty drugs.
DEMBOSKY: Betsy Imholz is with Consumers Union. She says the problem affects people with a range of chronic conditions, including HIV and multiple sclerosis. Last year, more than half a million patients in the U.S. had medication costs exceeding $50,000. Imholz says it's out of control.
IMHOLZ: We've heard stories of people who've emptied their retirement savings to cover their drug needs.
DEMBOSKY: So advocates went to Covered California, the Affordable Care Act marketplace. Last month, the health exchange became the first in the country to put a cap on how much consumers pay for these drugs. Starting next year, most people who buy insurance through the individual market will pay a maximum of $250 per prescription per month. Covered California board member Marty Morgenstern said the agency should do even more. It should go to the root of the problem, the pharmaceutical companies.
MARTY MORGENSTERN: They charge irrational prices on specialty drugs and on all drugs, as a matter of fact.
DEMBOSKY: He said the health exchange should band together with other agencies in the state to negotiate lower drug prices.
MORGENSTERN: Medi-Cal, Covered California, CalPERS, workers comp, the prison system, the state mental hospital system, we buy a lot of drugs. And I'm just wondering if there isn't some way we can leverage that to have some impact on the drug companies.
DEMBOSKY: In fact, Gov. Jerry Brown recently called for a task force to do just this after realizing the new hepatitis C drugs alone would cost the state $200 million in the next fiscal year. The pharmaceutical industry adamantly defends its prices. Robert Zirkelbach is with the leading drug company association.
ROBERT ZIRKELBACH: The cost and time it takes to bring a new medicine to marketplace is increasing as biopharmaceutical companies go after harder and harder-to-treat diseases.
DEMBOSKY: He says you have to put drug prices in context. Sure, hepatitis C drugs, like the ones Mikkel Lawrence takes, are expensive. But the cost of treating the complications of hep C is way higher.
ZIRKELBACH: The average annual cost of a patient with liver cancer today is over $110,000. If that patient needs to get a liver transplant, the cost is over $500,000. We're talking about a medicine here that cures the disease.
DEMBOSKY: In most people - but not Mikkel Lawrence. Turns out that $140,000 hep C regimen he took last year didn't work. He fell into the 5 percent of patients who don't respond. For NPR News, I'm April Dembosky in San Francisco. Transcript provided by NPR, Copyright NPR.
