Warrior Program, Fertility Grant Seek to Promote Equitable SCD Care
New resources will boost access to treatments, close funding gaps, claims NMDP/Be The Match
A new cost-free program, called Sickle Cell Warrior program, designed to promote equitable care and provide information on clinical trials and financial assistance to sickle cell disease (SCD) patients has been launched by The National Marrow donor program (NMDP)/Be The Match.
As part of this month’s SCD Awareness Month, NMDP)/Be The Match also announced the Sickle Cell Disease Fertility Preservation Grant to for SCD warriors looking to build a family following a stem cell transplant, the only established curative treatment for SCD.
“Through research and our work with sickle cell patients, we found that sickle cell warriors do not have equitable access to cellular therapies,” Mary Hengen, vice president of the NMDP/Be The Match, and a patient, said in a press release. “The Sickle Cell Warrior Program resources will increase access to treatment options through holistic programming and help close the gap in funding for fertility preservation to sickle cell disease warriors, which has been a barrier to transplant.”
SCD is a genetic and inherited condition that affects hemoglobin, the protein in red blood cells responsible for oxygen transport. SCD changes the normal round shape of red blood cells into a sickle-like shape. These defective red blood cells circulate poorly, leading to blockages that result in painful crises. Moreover, sickled red blood cells are weaker and tend to die prematurely, causing anemia (a shortage of red blood cells).
More than 100,000 people are affected by SCD in the U.S., according to estimates. Stem cell transplant is the only treatment to cure SCD. In the procedure, stem cells that give rise to healthy red blood cells are obtained from the bone marrow, blood, or cord blood of a compatible donor.
A recent study by NMDP/Be The Match and the Center for International Blood and Marrow Transplant Research supports bone marrow transplant for the long-term survival of SCD patients. Patients who remained alive for at least two years after transplantation had a 96% chance of being alive after 10 years.
NMDP/Be The Match global partnership helps coordinate stem cell transplants and keeps a registry of blood stem cell donors and cord blood units. It also conducts research and provides resources and education for both patients and physicians.
Its Sickle Cell Warrior program aims to enhance access to treatment by providing education, financial assistance, peer connections, and research.
Resources include sharing patient stories, educational tools from providers, counseling information, a tool to search for clinical trials, and free Warrior Packages with resources and tools.
These measures came on the heels of a research study published last year with the support of NMDP/Be The Match and the Center for International Blood and Marrow Transplant Research.
The study points out some limitations in Medicaid coverage to children undergoing bone marrow transplant across eight U.S. states (Florida, Georgia, Illinois, Michigan, New York, Pennsylvania, Texas, and Virginia). According to the authors, while bone marrow transplant was covered for children with severe SCD in all of the states analyzed, “there was limited legislative policy covering routine patient care costs associated with approved clinical trials, out-of-state benefits, and travel and lodging.”
To help patients, NMDP/Be The Match maintains close connections with community business organizations, including the Sickle Cell Health Reproductive Education Directive (SCRED), My Three Sicklers, Sickle Cell Transplant Advocacy & Research Alliance (STAR), Sickle Cell Community Consortium (SC3), Sickle Cell 101, Sickle Cell Foundation of Minnesota, and Sickle Cell Disease Association of Illinois (SCDAI).
Since medical procedures required for stem cell transplant might have a negative impact on fertility and the costs are not supported by insurance providers, the Be The Match Foundation, NMDP/Be The Match, and SCRED offer funding to support fertility preservation, allowing patients to build their families after a transplant.
The grant supports up to $10,000 to a limited number of qualified SCD patients. Applications are accepted on a continuous basis and funds will be directly issued to fertility clinics. More information can be obtained by emailing [email protected] or calling (763) 406-8114).
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