August 8, 2017

Compensating Bone Marrow Donors Will Close the Supply Gap and Save Lives.



The Wall Street Journal editorial board reported yesterday that the Health Resources and Service Administration (HRSA) regulation which sought to ban compensation for blood-forming stem cell donors has been defeated. This represents a small but significant victory for advocates of compensating organ donors — a practice that remains outlawed by the National Organ Transplant Act (NOTA).

The crux of HRSA’s rulemaking was a move to redefine blood-forming stem cells drawn from the bloodstream as an organ, no different from the bone marrow found within the bone, and thus under NOTA’s purview. Our friends at the Institute for Justice (IJ) rightly argued for years that such a move was nonsensical and illegal. Blood and plasma are explicitly exempt from NOTA’s ban on donor compensation, and as such donations of some subpart of the blood, including stem cells, should also be exempt.

The battle to kill the then-pending regulation heated up late last year, as HRSA neared its deadline to finalize the rule. The Niskanen Center formally joined IJ’s efforts in November, when we released a report called Bone Marrow Mismatch: How compensating bone marrow donors can end the transplant shortage and save lives. The report highlighted the enormous gap between bone marrow demand and supply under the current regime of voluntary donation, and argued against the applicability of the core ethical concerns advanced by HRSA. Our research and Hill event on the issue culminated in a listening session with HRSA officials, in which we argued that the social cost of enacting the rule was well in excess of $100 million, and thus worthy of delay for a deeper cost-benefit appraisal.

bone marrow stem cells

It’s unclear what happened next. HRSA’s hard December 18 deadline came and went, with a final rule that appeared to have been written but not formally submitted to the Federal Register. Perhaps it was the incoming administration, or the threat of litigation should the rule go through, or our research which provided a clear rationale for postponement. Regardless, the rule entered a strange purgatory, which is where it stayed until HHS formally withdrew the rule last week.

The Niskanen Center has received communications from a federal employee who believes our research was to some degree responsible for the rule’s ultimate repeal. That said, my research was simply part of a multi-pronged and multi-year effort to oppose the rule, led early on by IJ, the entrepreneur Doug Grant, the economist Mario Macis, and Peter Jaworski, the business ethicist and creator of DonationEthics.com.

The view of the Niskanen Center is that economic rights include the right to receive compensation for organ donations. NOTA therefore deserves a much deeper legal challenge. But in the meantime, let’s celebrate the defeat of this regulation as a clear example of what it means to make “small steps toward a better world.”