August 26, 2016 Print

Bone marrow registries rely on the generosity of donors, but far too often that generosity isn’t enough. Lacking the ability to provide incentives that would attract new donors, far too many leukemia patients die each year as they and their families wait for a solution that won’t arrive. What would you do if your child were dying because a bone marrow match couldn’t be found? A new short film from the Institute for Justice (IJ) provides a direct and heartbreaking answer: Everything.

In a commentary for the Wall Street Journal, IJ senior attorneys Jeff Rowes and Bob McNamara discuss Hemeos, a health-care startup that plans to revolutionize bone marrow donor recruitment by compensating donors for about $2,000 each. “As with every other valuable thing in the world, we will get more marrow cells when we pay for them,” they explain. “It’s Econ 101.” The problem is that Hemeos is stymied by bureaucratic delays from the Department of Health and Human Services (HHS), which has left the status of paid compensation for bone marrow donors in a legal limbo.

“And while HHS fiddles, patients die,” Rowes and McNamara write. “Thousands of Americans have died awaiting a marrow transplant since HHS embarked on this needless diversion. How many could have been saved? And of those still alive, how many could have received a transplant faster and with a better-quality donor?”

One of the most effective ways to get to the heart of an issue is through vivid storytelling, so IJ set out on a mission to dramatize the life-and-death stakes of bone marrow compensation. Developed in Atlas Network’s Lights, Camera, Liberty! program, the award-winning 16-minute short film Everything puts a personal face on the real-life struggle faced by thousands of dying leukemia patients and their families every year.

“The film has already racked up 14 laurels from film festivals across the nation and recently won Best Narrative Film and Best Narrative Short at the Anthem Film Festival in Las Vegas,” writes John Kramer, IJ’s vice president of communications. “Among its stars are Michel Gill, who played the President of the United States in the first two seasons of House of Cards, and Mandy Levin, who delivers a heart-wrenching portrayal of a mother desperately trying to find another compatible donor for her daughter after the only donor known to be compatible refuses to donate.”

Compensation for organ donors has long been a controversial issue, and people tend to conflate bone marrow donor compensation with it — but “most modern marrow donations use nonsurgical apheresis techniques very similar to blood donation,” Rowes and McNamara explain, and those cells grow back completely in the same way that blood does. There’s no good reason to outlaw an incentive structure that will provide crucial bone marrow donations to the otherwise terminal patients who so desperately need them.

“The right decision here is simple: Allow advocates for donor compensation to see if their approach works to save lives,” McNamara concludes. “Bone marrow donation is proven medical science, and thousands of altruistic donors are trusted every year to make an informed decision to donate. There is no rational reason to believe that donors lose their capacity to consent to donation just because they are compensated. Bone marrow is completely renewable; just like with blood donation, marrow donors don’t lose anything permanently. But donating marrow does take time, and it makes sense to give people some modest compensation for giving up their time to save a life. No one denies that there is a real shortage of matching marrow donors, and there are researchers and entrepreneurs who are ready to figure out whether compensating donors can help eliminate that shortage. The only thing standing in their way is HHS.”