Advocates Urge Lawmakers to Reauthorize the C.W. Bill Young Cell Transplantation Program and the National Cord Blood Inventory, Increase Funding to Expand the Nation's Marrow and Cord Blood Registry to Meet Americans' Increased Need for Transplant
More than 60 adult donors, transplant recipients, family members and medical professionals from 25 states met with lawmakers and staff on Capitol Hill today to urge Congress for increased federal funding to grow and diversify the national registry of adult donors and publicly available cord blood units as part of the C.W. Bill Young Transplantation Program (Program) and the National Cord Blood Inventory (NCBI). The advocates, participating in the visits as part of the National Marrow Donor Program's (NMDP) 2010 Legislative Day, also asked for Congress' continued support to increase marrow and cord blood transplants in the United States by reauthorizing the Program and the NCBI this year.
"With increasing numbers of Americans in need of bone marrow and cord blood transplants each year, reauthorization of the Program and the NCBI and additional funding for the Program, are critical to expand access to transplant for all Americans," said Jeffrey W. Chell, M.D., chief executive officer of the NMDP. "In order to grow the national registry, Congress must reauthorize the Program this year; the time to act is now."
The national registry, publicly known as the Be The Match Registry®, is a single point of access to more than 8 million adult donors and over 160,000 publicly available cord blood units, 28,000 of which are federally funded. The national registry is accessible to physicians and patients in need of an unrelated marrow or cord blood transplant. Every year 12,000 patients search the national registry for a life-saving donor or cord blood unit. These patients have leukemia, lymphoma and other life-threatening blood disorders for which a marrow or cord blood transplant may be the best and only hope for a cure.
Advocates met with members of Congress and staff to share their personal connection with the Program.
"I was unexpectedly diagnosed with leukemia in 2008 when I went to the doctor after suffering from fatigue. I was fortunate enough to find a match on the national registry and received a transplant in 2009," said Ron Ahlquist, a Legislative Day participant, husband and father of two from New Hampshire. "Now I am a leukemia survivor resuming my previously active lifestyle. I am so grateful to the Program and my donor. How do you thank someone for saving your life? I am committed to sharing my story and encouraging others to donate."
In 2005, Congress enacted the Stem Cell Therapeutics and Research Act, with the primary goal of growing and diversifying the national registry to increase access to marrow and cord blood transplant. The Program and the NCBI expire this year and must be reauthorized. Congressional support of this Program is needed annually to ensure patients have access to transplant, particularly among patients from racially or ethnically diverse populations who today face greater challenges in finding a donor. The NMDP hopes that Legislative Day will create a sense of urgency in Congress to act now to increase funding for the Program and to reauthorize the Program this year.
Engineered SNIPRs transform CAR T-cell precision for safer cancer therapy