Paying bone marrow donors for their time and money has the potential to save thousands of lives every year. What’s more, compensation has virtually no downsides. Yet the federal government is still fighting to stop it.
Proposed federal regulations would prohibit Hemeos, a health care startup, from using compensation to help people in desperate need of a marrow transport. This weekend, IJ’s efforts lead to newspapers across the country publicizing this injustice.
A new story from the Associated Press highlights the efforts of governments to keep donations on an all-volunteer basis, meaning people with limited resources have less flexibility to donate. The story, which has now been shared by over 80 outlets including The New York Times, references IJ’s work in challenging marrow donation laws:
An Arlington-based public-interest law firm, the libertarian-leaning Institute for Justice, successfully challenged the prohibition in 2009, and stands ready to sue again on Hemeos’ behalf, if the Obama administration’s rule takes effect. A final decision on the rule is expected by the end of the year.
Though bone marrow, like blood, is replenished by the body, marrow donors are treated differently from blood donors, who may be compensated. As such, marrow donors are in relatively short supply, as a result of which, thousands of patients with leukemia or other blood-related disorders are constantly searching for donors who meet a specific genetic match.
IJ Senior Attorneys Jeff Rowes and Bob McNamara explained in an op-ed in The Wall Street Journal, Hemeos has a relatively simple plan: compensate donors with around $2,000 so they have more incentive to donate.
The desperate need for more marrow donors was also the subject of IJ’s award-winning short film Everything, inspired by a 2009 legal challenge IJ brought against then U.S. Attorney General Eric Holder and the National Organ Transplant Act (NOTA) of 1984, which prohibited marrow donors from being compensated.
In 2012, the 9th U.S. Circuit Court of Appeals ruled that the ban on donor compensation could not be applied to most marrow donations. Unfortunately, the U.S. Department of Health & Human Services soon thereafter proposed a new rule to repudiate the legal victory.
Rowes and McNamara put it bluntly:
“It is time for HHS to decide. 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.”