RACHEL MARTIN, HOST:
We're going to talk about a very specific health problem now - kidney failure. The federal government will pay for expensive transplants for patients whose kidneys aren't working anymore. But after three years, the government will often stop paying for the drugs needed to keep that transplanted kidney alive. Thousands of people get caught up by this particular feature in the federal kidney program. NPR's Richard Harris tells the story of one woman facing that deadline.
RICHARD HARRIS, BYLINE: Hundreds of thousands of Americans get dialysis, typically four hours a day, three days a week to keep them alive once their kidneys fail. Medicare pays for this, even for people under the age of 65. Constance Creasey found herself in need of that service about a dozen years ago after her kidneys failed.
CONSTANCE CREASEY: The first three years of dialysis was hard. I walked around with this dark cloud. I didn't want to live, I really didn't.
HARRIS: Being dependent on these blood cleansing machines was physically and emotionally draining, but she stuck it out for 11 years as she waited for a kidney transplant also funded by Medicare.
CREASEY: Finally a year and a half ago, transplant came. I was a little apprehensive but I said OK. And I call her Sleeping Beauty, that's my kidney's name.
HARRIS: Creasey, a 60-year-old resident of Washington, D.C., no longer needs to spend her days at a dialysis center. She has enough energy for a part time job at a home furnishing store and time to enjoy life's simple pleasures.
CREASEY: I was able to do my favorite thing is go to the pool. And I was just loving it because it's like I had no restrictions now.
HARRIS: But there is still a dark cloud on Creasey's horizon. Medicare currently pays for a large share of the expensive drug she needs to take twice a day to prevent her body from rejecting the transplanted kidney. But under federal rules, that coverage will disappear three years after the date of her transplant.
CREASEY: I have a year and a half to prepare or say save. How am I going to do this?
HARRIS: She's already paying copays, premiums and past medical bills. And she says she sleeps on the floor because she considers buying a bed a luxury she can't afford. She has no idea what kind of insurance she'll be able to get after her Medicare coverage runs out and she was shocked to discover how big the bills could be. One day, she went into the pharmacy to pick up her drugs and the Medicare payment hadn't been applied.
CREASEY: They were like it's 600 copay. And I'm like, are you kidding me, 600? And I'm just like, what am I going to do? I can't pay that.
HARRIS: A social worker at MedStar Georgetown University Hospital, where Creasey got her transplant, sorted that out but it's not a permanent solution. Dr. Matthew Cooper, who runs the Kidney Transplant Program at the hospital, says this three-year cutoff for Medicare payments is a common problem, especially since many people with serious kidney disease have low incomes in the first place.
MATTHEW COOPER: That's probably about 30 percent of people that find themselves in a troublesome spot at this 36-month mark.
HARRIS: Cooper says some people end up trying to stretch out their drug supplies by not taking them as often as they need to.
COOPER: We see that a lot, you know, and it's a shame because you realize that people have real problems, real life problems where they're deciding, do I get my medications this month or do I pay my electric bill?
HARRIS: But this isn't like skipping a pain pill and bearing the consequences. People lose their transplanted organs if they don't take their medicine religiously. Assuming that doesn't kill them, they end up back on dialysis that costs $90,000 a year and is paid for by Medicare indefinitely. That's a lot more than the $15,000 it would cost to provide the drugs.
COOPER: The Medicare dollars in savings alone in maintaining this drug coverage is better than putting people on dialysis. To me, this is a no-brainer. I just cannot understand why we haven't got to the point where we say Medicare covers for life for immunosuppressive drugs because people will benefit and money will be saved.
HARRIS: Cooper has been trying to make that point on Capitol Hill, but legislation to fix this has always stalled out. Kevin Longino, head of the National Kidney Foundation, has been lobbying, too. He says in a Skype call, it's not just affecting the people who have transplants, but those who are on the long list waiting their turn for an organ to become available.
KEVIN LONGINO: The tragedy is you've got so many people on the wait list already and to have someone necessarily have rejection because they can't afford the drugs and have to go back into the system. It's just a difficult thing to explain why that - why we're allowing that to happen.
HARRIS: Lawmakers are concerned about the costs. Severe kidney disease already costs Medicare a staggering $30 billion a year. And the Congressional Budget Office never figured out whether the bill would save money overall or add to the costs of the program. But for Constance Creasey, this is not an abstract conversation.
CREASEY: Those pills are my life right now. Yeah. I'm trying not to worry, but it's hard.
HARRIS: Congressman Michael Burgess of Texas and Ron Kind of Wisconsin plan to reintroduce their bipartisan bill to fix this problem again next year. Richard Harris, NPR News.
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