MINNEAPOLIS--(BUSINESS WIRE)--As part of Sickle Cell Disease (SCD) Awareness Month in September, The National Marrow Donor Program® (NMDP)/Be The Match® is sharing the Sickle Cell Warrior Program, an initiative designed to eliminate barriers to equitable care, facilitate early referral and typing, and provide resources to empower warriors and caregivers. The organization also announced the Sickle Cell Disease Fertility Preservation Grant, which offers financial help for SCD warriors who want the opportunity to build their families post-transplant.
“Through research and our work with sickle cell patients, we found that sickle cell warriors do not have equitable access to cellular therapies,” said Mary Hengen, vice president, Patient, NMDP/Be The Match. “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 an inherited blood disorder that affects over 100,000 people of all ages in the United States. Round, healthy red blood cells containing hemoglobin move through small blood vessels to carry oxygen to all parts of the body. SCD causes the red blood cells to transform into a sickle shape, causing pain and life-threatening conditions and reduces life expectancy.
The Sickle Cell Warrior Program
The Sickle Cell Warrior Program aims to increase access to treatment through patient education, navigation, financial assistance, peer connections and research. A dedicated website, SickleCellConnect.com, serves as a resource hub for patients that includes warrior stories, education from providers, information on counseling, a clinical trial search tool and free Warrior Packages with valuable resources and tools.
NMDP/Be The Match maintains close relationships with community business organizations to connect with sickle cell warriors in their community and achieve shared goals. These include 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).
In addition, NMDP/Be The Match and the CIBMTR® (Center for International Blood and Marrow Transplant Research®) completed vital research on SCD, including A Qualitative Analysis of State Medicaid Coverage Benefits for Allogeneic Hematopoietic Cell Transplantation (alloHCT) for Patients with Sickle Cell Disease (SCD) and Long-Term Survival After Hematopoietic Cell Transplant for Sickle Cell Disease Compared to the United States Population.. NMDP/Be The Match continues to help sickle cell disease patients find and join clinical trials for additional treatment options.
SCD Fertility Preservation Grant
For individuals living with SCD, transplant is the only established curative treatment. As part of the transplant process, SCD warriors undergo a conditioning regimen that can impact fertility. Insurance providers do not cover costs related to fertility preservation for sickle cell disease, and there is extremely limited grant funding available to individuals.
With funding generously provided by the Be The Match Foundation®, NMDP/Be The Match and their partner Sickle Cell Health Reproductive Education Directive (SCRED) can provide financial help for SCD warriors who want the opportunity to build their own families post-transplant.
The grant can provide a limited number of qualified patients with up to $10,000 to help towards preserving fertility before transplant. All funds will be issued to medical providers (fertility clinics). Applications will be accepted on a rolling basis through Be The Match Patient Financial Assistance. For information, contact patientgrants@nmdp.org or (763) 406-8114.
Background:
NMDP/Be The Match is the leading global partner working to save lives through cellular therapy. With more than 35 years of experience managing the most diverse registry of potential unrelated blood stem cell donors and cord blood units in the world, NMDP/Be The Match is a proven partner in providing cures to patients with life-threatening blood and marrow cancers and diseases. Its global network connects centers and patients to their best cell therapy option. It is a tireless advocate for the cell therapy community, working with hematologists/oncologists to remove barriers to consultation and treatment and supporting patients through no-cost programs to eliminate non-medical obstacles to cell therapy. NMDP/Be The Match is a global leader in research through the CIBMTR, investing in and managing research studies that improve patient outcomes and advance the future of care.
