All IJ cases are important, but our recent victory on behalf of cancer patients across the country could literally be the difference between life and death.
Eight years ago, IJ launched the first legal challenge to the National Organ Transplant Act (NOTA), taking on the federal law against compensating lifesaving bone marrow donors. The premise was simple. A bone marrow transplant involves giving a donor’s immature blood cells to a patient dying of leukemia or some other deadly disease. Like all blood cells, these immature blood cells regenerate after donation so the donor loses nothing. Yet even though it is legal to compensate blood donors, compensating marrow donors was a federal crime that could land you in prison for five years. The ban on compensating donors, unsurprisingly, resulted in chronic shortages, costing thousands of lives every year.
We took on this unusual case to vindicate a basic principle of economic liberty: People will do useful, even lifesaving, things when they are compensated in a system of voluntary exchange. In the case of NOTA, by contrast, we operate according to principles that would have been familiar to citizens of the Soviet Union. Buyers cannot pay sellers and resources are distributed by a central planner—there is rationing, waitlisting and needless suffering.
Our initial goal was modest: Get the government to allow medical researchers and economists to run a pilot program focused on minority patients, who have the hardest time finding a matching marrow donor, to see if compensation would create more and better quality transplants. The form of compensation would be a mortgage payment, a scholarship or a donation to a charity of the donor’s choice.
We prevailed in 2012 before the 9th U.S. Circuit Court of Appeals, which held that NOTA could not be applied to marrow donations that use the modern method of taking the immature blood cells directly from the bloodstream, as opposed to the more painful and invasive procedure of taking bone marrow from the hip. This was a huge step forward because the majority of donations occur this way.
Even though it is legal to compensate blood donors, compensating marrow donors was a federal crime that could land you in prison for five years.
Then, before any research could get underway, the U.S. Department of Health and Human Services (HHS) proposed a new federal regulation that would have negated our court victory. We marshalled more than 500 public comments against the new rule (proposed federal regulations typically generate a handful of such comments), including one by Nobel Prize-winning economists. In our own comment, IJ explained to HHS that its proposed rule was illegal and that we would immediately challenge it in court if enacted.
As people across the country continued to die, including children such as our client’s son Arya Majumder (who passed away at age 11 while our case was pending), HHS did . . .
nothing. It sat on the proposed rule for years. Fed up with this inaction, Congress imposed a deadline of December 2016, a deadline that the agency ignored. This was frustrating because no research could even begin as long as there was a threat that the program could suddenly become illegal.
We were fed up, too. To drive the issue to the forefront, we produced our own award-winning short film, called Everything. It earned 17 laurels at film festivals across the country and applied important pressure on HHS (you can watch the 16-minute film at www.everything.movie). Behind the scenes, we also began preparing a lawsuit that would force HHS to act, either passing or rejecting the rule. This would allow research to proceed or provide us with the basis to challenge any new regulation.
The uncertainty came to an end, however, when HHS withdrew the proposed rule on August 1, 2017, thanks in part to the media coverage of IJ’s litigation, the profile of the issue being raised by our short film, and our unwavering commitment to fighting the proposed rule. This happy news cleared the way for researchers to begin their pilot programs and for entrepreneurs to launch their own donor-compensation enterprises. Patients, doctors and transplant coordinators now have the freedom to do the one thing that will almost certainly lead to more donors: compensate them.
The path to victory in an IJ case often winds on for many miles. But, as our bone marrow case illustrates, perseverance will carry us to the end of the journey. And the freedom we ensure can not only make lives better, but also save them.