As reported on WMUR and behind the Telegram paywall, the Caitlin Raymond International Registry (which works with UMass Memorial Health Care) is currently under investigation for having models flirt people into joining their bone marrow registry and then slapping them (or their insurance company) with a huge bill for the HLA typing costs. (The cost of these types of tests should be about $100, but it’s alleged that some were charged over $4,000.)
I’ve been a member of the National Marrow Donor Program Registry for about ten years, as have both of my siblings. I joined for free after donating two units of platelets at Dana Farber, and my brother joined in a marrow registry drive on behalf of a child who had a life-threatening disease.
My brother was not a match for that child, but a few years after joining, he was contacted because he was the only match (in the world) for a two-year-old in Germany. He donated marrow and some other blood products for that child over the course of a few years. While the process was not without pain and discomfort, it wasn’t a tremendous burden on my brother, and it was a tremendously worthwhile experience.
If you aren’t a member of a bone marrow registry, and are between the ages of 18 and 60, I highly recommend joining the national registry. Many blood donation centers will waive the fee after you donate so many units of whole blood, platelets, or red cells.
I hope that this situation doesn’t discourage people from joining reputable registries. For some patients, the chances of finding a match in their family can be slim. When I say that my brother was the only match in the world for that child, I mean that literally. The child’s parents and other family members weren’t a match, and the doctors had already checked the European registries with no success. If my brother had not been on the registry, they would have been out of luck.
If you’re a person of color or someone of Mediterranean descent, you should especially consider joining the marrow registry. These groups are underrepresented, and we can have blood diseases (thalassemia, various forms of anemia, etc.) that do not appear in other groups.
If you or someone you know is pregnant, you should also ask your ob/gyn or midwife about the possibility of donating the umbilical cord blood to a Massachusetts registry like the one at Brigham and Women’s. (Cord blood is especially valuable because it requires less of a perfect match than does bone marrow.)
For those of you also interested in organ donation, the RMV now allows you to contribute to a Organ and Tissue Donor Registration Fund when you renew your driver’s license. You can also update your Organ & Tissue Donor status on the RMV website at any time.
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