What would you do to save a loved one, asks the short film "Everything."
Produced by the Institute for Justice, "Everything" dramatizes the difficulty of a family struggling to find a bone-marrow donor for a child. The movie makes a powerful case for an obvious solution that we at Reason have advanced for decades: Compensate donors who provide organs, body tissue, and other substances. Waiting lists and deaths attributable to chronic shortages would shrink overnight.
But such an obvious, common-sense solution is blocked at every turn by defenders of a status quo that serves everyone's interest but the patient's. While donors can be compensated for certain substances (blood plasma, sperm), federal law prohibits the sale of organs, body tissue, and a variety of other substances. Sometimes the argument against compensation is rooted in religious objections and sometimes it's masked in the language of "medical ethics." What never gets addressed is a death toll that will continue to climb as more and more people need transplants and are denied by a supply chain that doesn't come close to meeting demand.
Here's the original writeup about "Everything." Go here for more information about the movie and larger cause.
Every year, nearly 3,000 Americans die because they cannot find a matching bone marrow donor. Common sense suggests that offering modest incentives to attract more bone marrow donors would be worth pursuing, but federal law made that a felony punishable by up to five years in prison.
That is why in 2009, adults with deadly blood diseases, the parents of sick children, a California nonprofit and a world-renowned medical doctor who specializes in bone marrow research joined with the Institute for Justice to launch a legal fight against the U.S. Attorney General to put an end to a ban on offering compensation for bone marrow donors.
The National Organ Transplant Act (NOTA) of 1984 treats compensation for marrow donors as though it were black-market organ sales. Under NOTA, giving a college student a scholarship or a new homeowner a mortgage payment for donating marrow would land everyone—doctors, nurses, donors and patients—in federal prison for up to five years.
NOTA's criminal ban violated equal protection because it arbitrarily treats renewable bone marrow like nonrenewable solid organs instead of like other renewable or inexhaustible cells—such as blood—for which compensated donation is legal. That makes no sense because bone marrow, unlike organs such as kidneys, replenishes itself in just a few weeks after it is donated, leaving the donor whole once again.
In 2011, the 9th U.S. Circuit Court of Appeals ruled in favor of the cancer patients and their attorneys from the Institute for Justice, holding that the National Organ Transplant Act's ban on donor compensation does not apply to the most common method for donating marrow. The U.S. Attorney General sought to have that ruling overturned by the full 9th Circuit, but was unsuccessful.
The Institute for Justice's legal victory became final in June 2012, and a new tool in the fight against deadly diseases became available, when the Attorney General declined to appeal its loss to the U.S. Supreme Court.
But no sooner was that legal victory established than the U.S. Department of Health & Human Services proposed a new rule that would negate the legal victory and block model research programs designed to examine the effectiveness of compensation. Nearly 500 people—including Nobel Laureates—wrote to HHS discouraging them from adopting the rule. But for nearly 3 years now, HHS has remained silent blocking such research and costing American cancer patients their lives.