A few days before Christmas 2021, my three siblings and I received the news that the whole family dreads: Our father had been diagnosed with cancer.
Dad had seemed fine at Thanksgiving. He had just complained of a persistent cold when we forced him to go to the doctor to get medicine.
And that’s how he learned of his diagnosis.
Acute myeloid leukemia (AML) is a rare form. Only 20,000 people get diagnostic with her every year, and oonly on 30 percent of patients reach the five-year mark. When my dad went into urgent care in Collegeville, PA after a minor complication, they told him to go to the ER.
We later learned that if our father hadn’t gone to the doctor, he probably would have only survived a few more days. Few can say they came This close.
He immediately started chemotherapy, which he took in stride, while working for the pharmaceutical company to which he had devoted most of his professional life. Our family focused on the next step: getting him healthy enough for a bone marrow transplant, which looked like his only hope of beating LAM. His two brothers and four children lined up to see who would be the best human leukocyte antigen (HLA) match.
Siblings are usually preferred over children for a bone marrow transplant because there is a higher chance that a sibling will be a perfect HLA compatibility for the patient. Unfortunately, my father’s brothers are perfectly compatible with each other, but not with him. So the doctors turned to the next best match: Lucky me.
In 2020, there were more than 22,000 bone marrow transplants carried out in the USA. Of the transplants that were not autologous, only about 30 percent donations came from individuals, like me, who were related to the recipient. Thus, the majority of patients rely on donations from strangers, but only 2 percent of Americans are on the registry to be considered for donation.
The chances of finding a perfect match in the registry strongly depend on the patient’s ethnicity. If the patient is white, the chances of a match are 79%, but if the patient is black, that number drops to 29%. And finding a match is just the first step. Getting the match to actually agree to donate is a whole different beast. This only really happens about half the time.
More … than 85 percent bone marrow donations are now done through a process called pperipheral blood stem cell apheresis. Instead of an intimidating needle punch to the hip, I sat for six hours while 4 million of my stem cells were filtered from my bloodstream. More than 35,000 people have donated bone marrow to a stranger without death of a single donor. So if there’s no real risk to the donor, why aren’t more people donating?
Before the judgment of Flynn v. Incumbent in 2011 he was illegal to compensate someone for their bone marrow because the National Organ Transplantation Act of 1984 treated the marrow as if it were an organ. Now bone marrow is treated as if it were blood or plasma. More than 20 million people donate plasma each year and to be paid $50 to $75 per appointment. In fact, the United States stationery 70% of the world’s plasma partly because it is one of the few countries that pays donors.
Yet no one was paid for his bone marrow.
Companies like Hemeos attempted to create an incentive structure to compensate bone marrow donors up to $3,000 per donation, but failed to challenge the key player in this field: Be the Match. With more than 22 million people on its registry, Be the Match, run by the National Marrow Donor Program (NMDP), is firmly opposed to compensate donors even if they brag how they pay for all medical expenses and travel expenses related to the donation. Their whole identity rests on the fact that they rely on selfless volunteers driven by the desire to help others and not by financial gain. “Be the Match will be a barrier to using incentives. They’re very jurisdictional,” said Peter Jaworski, professor of ethics at Georgetown University’s McDonough School of Business. recount Raison.
The reality is that no cancer patient, or anyone with a blood disease, really cares whether their donor provided marrow for the “right” reasons.
More than a year later, my father’s transplant was considered a success. He is cancer free but still needs regular blood products to stimulate the healthy cells I received from me.
We were lucky not to have to leave his life to chance, but if that had been the case, we would have been willing to write a check to anyone who was a perfect match.