Politics & Policy

What Would You Do to Save Your Child’s Life?

Kristin Dattilo (left) and Mandy Levin in Everything (Institute for Justice)
The government’s idiotic rules on bone-marrow donation may be killing thousands each year.

When accidents happen and kill people, it’s a tragedy. But when Congress creates the equivalent of a legislative accident that kills people, it’s an outrage.

Every single year, between 2,000 and 3,000 Americans die after failing to find a matching donor for bone marrow. One reason is that a 1984 law — the National Organ Transplant Act (NOTA) — bans people from being compensated for donating bone marrow. The ban is nonsensical. The law makes it legal to compensate someone for giving blood, sperm, eggs, or other “renewable tissues” while prohibiting compensation for nonrenewable organs such as kidneys. At the last minute, a ban on compensating bone-marrow donors was thrown in, probably because it sounded like it involved an organ. But bone marrow — like blood plasma — is renewable, meaning donors ultimately lose nothing but their time. Bone marrow is the only renewable tissue for which compensation is banned.

This is a problem for the 20,000 Americans who contract leukemia or other blood diseases treatable with bone marrow annually, and face big hurdles in finding a genetic match to begin with. Only 30 percent of patients who need a bone-marrow transplant have a matching donor in their families. The remaining 70 percent must hope that a compatible stranger can be found using a national registry to which only 1 out of 450 Americans belong. And if they find a matching donor, there’s a good chance that donor won’t agree to come through. Bone-marrow shortages are all too common, and they lead to heartbreak for thousands of families each year.

Allowing the same type of economic incentives that can be offered to blood donors would boost bone-marrow donations. Research by three leading economists shows that such incentives work around the world to boost blood donations. Out of 19 incentive-based programs they looked at, the economists found that 18 boosted donations. When the American Red Cross offered T-shirts and coupons at blood drives, donations rose by 16 percent. An Italian program that granted one day of paid leave from work was associated with a 40 percent increase in donations.

The unnecessary suffering caused by shortages of bone marrow prompted lawyers from the Institute for Justice, a non-profit legal defense fund, to launch a challenge to the bone-marrow compensation ban in court. Their client was Doreen Flynn, a Maine woman searching for a way to save three of her children who suffer from Fanconi anemia, a rare and debilitating blood disease. After years of struggle, in 2011 Doreen and IJ convinced the Ninth Circuit Court of Appeals to rule that NOTA did not ban compensation for apheresis, now the most common form of bone marrow donation.

The ruling prompted former Navy aviator Doug Grant to create the health-care start-up Hemeos. Hemeos wants to disrupt the altruism-only model and compensate willing bone-marrow donors $2,000 for their time. After all, many donors must take time off from work or find a caretaker before they can donate.

Allowing the same type of economic incentives that can be offered to blood donors would boost bone-marrow donations.

But Hemeos is stuck in a bureaucratic limbo that prevents it from operating. In 2013, the Department of Health and Human Services (HHS) proposed an administrative rule that would ban bone marrow donations made through apheresis, and severely punish those involved in such donations. The proposed prohibition went out for public comment and was met with withering criticism. But it’s never been withdrawn, and HHS isn’t talking. That leaves Hemeos in limbo unless HHS finally scraps its proposal.

The Institute for Justice has now decided it’s time to apply public pressure to lift the sword of Damocles hanging over Hemeos. They’ve gone into the movie business by dramatizing the plight of those patients who need a bone-marrow transplant and can’t get one. Their short film Everything asks a basic question: What would you do to save your child’s life?

The movie follows a single mother named Brenda whose daughter is suffering from cancer. Brenda gets the devastating news that the bone-marrow donor who can save her daughter’s life won’t donate after all. Her doctor explains that she can’t offer compensation to a donor: “They look at it like selling a kidney.” The moral dilemmas and the pain the film highlights are heartrending.

The Institute for Justice is demanding that the government simply make up its mind. Bob McNamara, an IJ senior attorney, puts the message to HHS simply: “Either allow donor compensation and let firms like Hemeos revolutionize marrow donation, or ban compensation and face an immediate legal challenge over a delay that is causing needless deaths.”

Polls show that people expect less of government today at all levels than ever before. But at the very least, government shouldn’t be using its power to prevent those who want to save lives from doing so. After all, the Hippocratic oath that the medical professionals at HHS are bound to follow is clear: “First, do no harm.”

— John Fund is National Review Online’s national-affairs correspondent.


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