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MARAC Statement: Health Insurance Coverage for Hematopoietic Stem Cell Transplant for Sickle Cell Disease from HLA-matched Sibling Donor (MSD HCT)
Hematopoietic stem cell transplant for sickle cell disease from HLA-matched sibling donor (MSD) after myeloablative conditioning has been proven as curative therapy for sickle cell disease for over 25 years. It is no longer considered an experimental procedure. Over 2,000 transplants have been performed successfully across the world from HLA-matched sibling donors. Pooled Overall Survival rates for children and adults are high at 97% and 98%, respectively (meta-analysis by Iqbal 2021). The outcomes in sickle cell disease are much better for younger ages, but outcomes can still be good for selected adults. MSD HCT is expensive, but multiple analyses have shown that long-term health care costs go down, quality of life improves and organ damage is usually slowed or stopped. This means that MSD HCT is very cost-effective for the family, the health care system and society in general (less than $50k per QALY). Therefore, it is logical for MSD HCT to be covered by health insurance.
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This platform is made possible through a partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA) and its member organizations. SCDAA's mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.