Baby Boomers With Hemophilia Didn't Expect To Grow Old : Shots - Health News A generation that survived life-threatening bleeds, the HIV epidemic and hepatitis C now nears retirement with an illness that can mostly be safely managed at home — for about $250,000 a year.
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Baby Boomers With Hemophilia Didn't Expect To Grow Old

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Baby Boomers With Hemophilia Didn't Expect To Grow Old

Baby Boomers With Hemophilia Didn't Expect To Grow Old

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RENEE MONTAGNE, HOST:

Many older adults with the blood disease hemophilia were told they would die young. Then a new blood treatment developed in the 1960s turned life around, until the 1980s when it became tainted by HIV. Now a small generation of survivors is surprised to find themselves nearing retirement age. For member station KQED in San Francisco, Lesley McClurg reports.

LESLEY MCCLURG, BYLINE: When Randy Curtis bumped his knee in second grade, he received devastating news.

RANDY CURTIS: My mom had taken me to the hematologist. And he said, you know, these kids don't live much past 13.

MCCLURG: And so Curtis delivered surprising news to his math teacher the next day.

CURTIS: I don't have to learn this stuff. I'm going to be dead.

MCCLURG: But he was wrong. He's made it.

CURTIS: To the ripe old age of 61.

MCCLURG: Curtis has hemophilia, a rare genetic disease. His liver doesn't produce a protein that makes his blood clot. To prevent internal bleeding by something as benign as a bump or a fall, Curtis had to wear protective gear growing up.

CURTIS: There was always this worry about - was I going to bleed?

MCCLURG: He went to school in a wheelchair. He wore braces on his elbows and his knees.

MARION KOERPER: For these children, the bleeding doesn't stop. And after six or eight hours, the ankle or the knee joint is swollen to the point where it's extremely painful.

MCCLURG: Marion Koerper is a retired pediatric hematologist from UC, San Francisco.

KOERPER: They can't straighten their leg. And they need to be brought in for treatment.

MCCLURG: The emergency room was a second home for patients. But then in the late 1960s, scientists discovered how to make the protein, or clotting factor, missing from hemophiliacs' blood. Suddenly, patients started living relatively normal lives.

KOERPER: But in the early 1980s, because these products were coming from human blood, it turned out that they were all contaminated with HIV and hepatitis C.

MCCLURG: Having just received a new lease on life, Koerper says half of the hemophilia patients in the U.S. were infected with HIV.

KOERPER: And those were really dark days. I looked at my patients and said they're going to die.

MCCLURG: Today, there are only about 550 hemophiliacs in the country who are over 60 years old. Randy Curtis is one of them. But he was still touched by the tainted clotting factor. He battled hepatitis C many years later. And his inner circle was ravaged by HIV.

CURTIS: A lot of my really good friends are gone. A lot of their wives are gone because, you know, there was a lot of spread of HIV before we even knew it was HIV.

MCCLURG: Fortunately, much of the threat of virus contamination was eliminated in the 1990s when scientists began making clotting factor synthetically, rather than from human blood. Randy Curtis injects himself every few days. At his dining room table in the Bay Area, he wraps a tourniquet around his arm.

CURTIS: And I'm going to open this box up and take out all the parts because it comes with its own needle and its own Band-Aid and its own alcohol swab.

MCCLURG: His clotting factor is made here at Bayer HealthCare's plant in Berkeley.

HANSJOERG DUERR: We have to support, grow, harvest, work with the cells day in and day out.

MCCLURG: The company genetically modifies cells in large steel tanks.

DUERR: These are mammalian cells coming originally out of a hamster.

MCCLURG: Bayer is one of several biotech companies that develop similar synthetic clotting factors. But some hemophiliacs develop antibodies to products manufactured through DNA technology. That's why some clotting factor is still sourced from human blood, though manufacturers are much more careful to prevent disease contamination.

Meanwhile, Randy Curtis is enjoying an early retirement from the state's public health department.

CURTIS: Nice. Mid-air catch - that's what we're looking for.

MCCLURG: As he plays fetch with his dog, he's grateful for a middle age he never thought he'd reach.

CURTIS: I've been really lucky. I mean, I'm vertical, right? I can't complain.

MCCLURG: But his journey is a first-world tale. Curtis' insurance pays about $250,000 annually for his treatment. And even though kids with hemophilia can live totally normal lives today, the majority of patients in developing countries still die around puberty. Curtis hopes to change that through volunteer efforts to improve international care.

CURTIS: We're building tools for developing countries and showing them how to collect data and do their own advocacy.

MCCLURG: He hopes his story can someday be the norm everywhere. For NPR News, I'm Lesley McClurg in San Francisco.

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