By Kumud Majumder
My 11-year-old son, Arya, was an angel who transformed my life. His death from leukemia last April took away not just my only child, it also took away my very heart and soul, and triggered the collapse of my 23-year marriage.
Arya’s tragedy happened in part because of a lack of bone marrow donors. Each year, as many as 3,000 people in the U.S. die waiting for a bone marrow donor match. A significantly higher number of people die from complications arising from partially matched donors. This is largely avoidable, and the shortage of donors is made worse by a federal law that I and other families of cancer patients are fighting in federal court. On Tuesday, the U.S. Court of Appeals in Pasadena, Calif., will hear arguments in our constitutional challenge against the U.S. attorney general.
Our suit contests the part of the National Organ Transplant Act that bans families like ours from setting up a pilot program to offer modest compensation to donors with the most needed bone marrow and thus save more lives. The law makes offering any compensation—such as a housing allowance—a federal crime that could land everyone involved (from the doctor to the donor to the patient) in jail. In our view, the Constitution does not allow the government to imprison people for doing no harm while saving lives.
Severe donor shortage
The problem for cancer patients is that only 2% of Americans are on the national bone marrow donor registry, which makes finding a perfect donor match like finding a needle in a haystack. Finding a bone marrow donor match isn’t as simple as finding a blood donor match; bone marrow donors must be compatible on a deep genetic level—something that is especially hard to find for minorities.
Arya received a close-but-not-perfect donor match in 2009, which created painful and life-threatening complications for him that required hospitalization for an extended time. A better match may have saved his life. Expanding the donor pool will not only create more donor matches, but also better ones.
But to increase the donor pool, it makes sense to offer modest compensation to offset the inconvenience and discomfort of donating. Donors generally donate by receiving an injection once a day for five days to increase marrow-cell production, and then having marrow cells drawn from their arm using the same technique used by donors of other blood components such as platelets and plasma. The medicine can cause flu-like symptoms, and the donation process can take several hours. Right now, donors who are informed that they are a match sometimes decide not to donate, often because they can’t take time off work. Offering simple incentives, including college scholarships to young-adult donors—whose marrow is healthiest—could increase the number of people who go through with donation.
This case isn’t about medicine; everyone agrees that bone marrow transplants save lives. This case is about whether individuals can make choices about compensating someone or receiving compensation for making a bone marrow donation without the government stopping them.
Marrow different from organs
Inevitably when I discuss this issue, people raise concerns about markets in human organs and wonder whether compensation would exploit the poor. These are legitimate concerns that can be easily addressed in the context of marrow donations.
Organs such as kidneys do not grow back when they are removed, and kidney donation requires invasive surgery.
Bone marrow, on the other hand, is a special type of blood cell that grows back. Donating bone marrow uses a technique similar to donating other blood cells such as platelets for which compensation is legal. Donating marrow is safe, and more than 40,000 people have donated bone marrow without a single donor death. And patients receive donor bone marrow like blood, through a transfusion.
The differences between irreplaceable organs and bone marrow answer concerns about the poor. Here compensation would be a safe and ethical way to do no harm while bringing together the most needed donors and patients who are otherwise certain to die.
Despite all Arya went through, his resilience never wavered. He truly lived up to the name we gave him: “Arya Avalokitesvara”—the Great Compassionate Lord Buddha. Arya is my hero who inspired his mother and me to create an organization to fight childhood cancer (www.aryaskids.org) and fight for bone marrow transplants.
In the end, creating more and better bone marrow donor matches through a system of modest compensation will save the lives of patients, improve the lives of donors, drive down the costs of treatment and improve the quality of life of cancer patients as they battle to survive.
Arya always wished that all the kids at the hospital where he was treated would go back home one day fully cured. Let’s work to make that dream a reality.
Kumud Majumder, Ph.D., lives in Upper Saddle River, N.J. To learn more about his lawsuit visit www.ij.org.