HHS vs. cancer patients

Why would federal health officials want to make felons out of those trying to save the lives of thousands of Americans suffering from leukemia and other deadly blood diseases?

That’s a question many doctors, patients and their families are asking as the U.S. Department of Health and Human Services seeks to re-criminalize compensation for bone marrow donors.

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The agency’s move comes on the heels of a 2011 federal appeals court ruling which held that paying a modest stipend to some marrow donors does not run afoul of the National Organ Transplant Act of 1984, passed by Congress to ban trafficking in human organs such as kidneys. But the decision by the 9th U.S. Circuit Court of Appeals also acknowledged that HHS regulators have authority under NOTA to enact new rules criminalizing compensated marrow donation.

And that’s just what the agency intends to do as revealed in a “notice of proposed rulemaking” published last October. Unfortunately, implementation of such a regulation – which is still pending – would undermine medical freedom and have life-or-death consequences for the thousands of people now desperately seeking a marrow donor.

HHS acknowledges that each year 20,000 Americans are diagnosed with a disorder that could best be treated with a bone marrow transplant, but there is an acute shortage of donors. The problem hits minorities especially hard because they are least likely to find a compatible donor match.

Medical advances in recent decades have made it much easier and less invasive for doctors to collect marrow from healthy men and women, vastly expanding the potential pool of donors – a godsend for those stricken souls struggling to find a match. Rather than injecting a needle directly into the bone of a donor to extract marrow – a process requiring general anesthesia and resulting in significant discomfort – physicians are now often able to use a technique called apheresis in which they draw blood from a donor’s arm, pass it through a machine to remove the marrow cells, and then return the remaining blood to the donor.

It’s a safe, proven and effective method of obtaining bone marrow that is used thousands of times each year.

To attract more donors, some organizations, including the California nonprofit MoreMarrowDonors.org, proposed offering a $3,000 stipend – to be used as either an academic scholarship, housing allowance or a gift to charity. The proposal led to the federal court case and now a possible HHS ban on the practice.

But treating bone marrow as if it were the same as a human liver or kidney is wrong. Marrow, unlike livers or kidneys, is renewable – donors replenish their lost marrow cells within four to six weeks. The risk to donors during apheresis is much less than the risk of donating female ova – and there is no federal ban on compensating donors of that.

Some medical organizations express concerns that the sinister “profit motive” may lead potential marrow donors to lie about their medical history. But this can be addressed through routine testing, the same way blood banks maintain controls to screen out tainted blood. Nor is there any specter of wealthy patients manipulating the system by writing checks to “coerce” the indigent and vulnerable into endangering their own health out of financial desperation. Donors and patients are matched anonymously through the national registry based on a number of factors, and the money to compensate donors would be raised through third-party charities.

Federal health regulators should encourage rather than block any reasonable proposal to inspire more people to become bone marrow donors. Otherwise, thousands of Americans suffering from deadly blood diseases could become casualties of bureaucracy as much as casualties of disease.

Kerr is a communications fellow with the Institute for Justice, a libertarian public-interest law firm in Arlington, Va.