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Alert Number 212
Date: January 7, 2024
I would like to draw your attention to a couple of additional items of interest to those considering the stem cell transplant program at the National Institutes of Health, under the program described in our very recent article, Stem Cell Transplants — Almost Free.
Several patients presently undergoing mini-allo transplants at other institutions wrote to us after reading our article. It seems I had badly underestimated the potential cost of a mini-allo transplant. The present dollar figure seems to be somewhere above half a million dollars, as much as a million if things become complicated! Wow. That makes the NIH “almost free” program all the more interesting.
I now have the official Patient Information Packages (both for the patient as well as the sibling donor). Write to me if you are interested and I can send you PDFs of the documents, as email attachments.
On the good news front, it seems we can expect quite a few more than the 20 slots available for our patients. (Anyone heard the phrase, the squeaky wheel gets oiled?) But it is still a drop in the bucket, so if you are considering this program it is important that you get in touch with the Research Nurse Coordinator right away. I understand Ms. Laura Musse prefers to be contacted by email, it may be harder to reach her by phone. You can get her contact information by going to the article link cited above. Do tell her CLL Topics sent you. I spoke with her on the phone. She sounds like a nice lady.
I want to take this opportunity to thank all of our members who wrote us in the past few weeks wishing PC and me happy holidays. Our sincere thanks as well to the generous folks who sent in their donations. Each and every dollar counts, and is deeply appreciated. It represents not only money with which we can sponsor/fund clinical trials, it also represents the grassroots support for CLL Topics, and that is the fuel that keeps this effort going full steam ahead.
Be well,
Chaya
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