Despite the argument offered by John Kerr in “HHS vs. cancer patients,” the current system for recruiting marrow donors isn’t broken. Today, a combined 22.5 million people are listed on volunteer registries worldwide, including more than 11 million on the national registry in the United States. None of these registries allow donors to be compensated for their marrow. Yet the number of people joining these registries grows every day.
Still, Kerr asserts that compensation will inspire more people to volunteer as marrow donors. For multiple reasons, this proposal is inherently flawed and the rationale forwarded by Kerr in its support is not entirely correct.
Last year, 5,200 Americans donated marrow, expecting nothing in return except for the honor of saving another person’s life.
Kerr’s proposal to offer a “modest stipend” of $3,000 per donation is not only unnecessary—it’s financially unsustainable. Do the math on the proposal: Charities would have to raise well over $15 million dollars each year—or rely on government funding—just to compensate donors who already give out of the goodness of their hearts.
That same $15 million could save more lives by adding 150,000 new people to the national registry; providing financial assistance to patients who can’t afford transplant; and supporting research efforts to improve transplant outcomes.
Already, a majority of patients are able to find a match today. A patient’s likelihood of having a matched, available donor on the registry ranges from 76 percent to 97 percent, depending on the patient’s genetic makeup. And patients’ access to donated umbilical cord blood—which doesn’t need to match as closely as marrow —is improving these numbers even more.
At its core, the issue of patient access to transplantation goes beyond finding a well-matched donor on the registry. Bigger barriers prevent people from receiving these life-saving procedures.
Ask the teams who care for transplant patients in transplant centers across the country, and they’ll tell you that lack of insurance is the primary obstacle that stands between patients and the transplants they need. Most transplant centers do not accept patients who lack insurance or the ability to pay for the procedure.
Also, without health insurance, people do not receive adequate treatment for their disease and are not referred early enough to successfully receive a transplant. Research clearly shows that patients transplanted earlier in their disease have better outcomes than patients with advanced disease. But too many patients—especially minorities—are referred too late.
Donor compensation in no way addresses these sociodemographic barriers to transplant—obstacles that occur well before the search for a donor even begins.
On the donor side, there’s no shortage of people who prefer to give altruistically—only a shortage of resources needed to cover the costs of recruiting and testing people who are willing to join the registry.
Why spend additional money on compensating donors—people who aren’t looking for any form of payment in the first place—when that money could be spent on adding more people to the volunteer registry? Adding more people to the registry, including those with more diverse tissue types, will certainly continue to help patients.
But even if the registry were to double in size, there still wouldn’t be complete matches for all patients.
The reason: The scientific complexity of matching patients to donors. This is where continued funding for research becomes imperative—another issue that Kerr’s proposal fails to address. Finding ways to make transplants more successful using less compatible donors will help more patients in the long run.
Today, thanks to relentless research efforts, transplants between unrelated patients and donors often are as successful, if not more, as those between family members.
Now, researchers are finding ways to make transplants using mismatched donors as successful as those using complete matches. This includes using partially matched family donors, like a parent or sibling (called haploidentical).When haploidentical transplants become as successful as unrelated transplants, all patients will be able to find a match.
On close examination, Kerr’s proposal raises a multitude of safety, moral and ethical concerns while not even addressing the real barriers preventing patients from receiving the transplants they need.
Let’s instead focus on supporting vital research and improving patients’ access to quality and timely care—not on adding additional and exorbitant costs to a system that is already saving lives every day.
LeMaistre is immediate past president of thebAmerican Society of Blood and Marrow Transplant (ASBMT), and currently vice president and physician-in-chief of Hematology and Hematopoietic Cell Transplant at Sarah Cannon.