Critical legislation to reauthorize the C.W. Bill Young Cell Transplantation Program needed to save lives by connecting patients with blood cancers to unrelated donors across the world
October 21 2019
The National Marrow Donor Program®(NMDP)/Be The Match® urges Congress to reauthorize the C.W. Bill Young Cell Transplantation Program (Program) and the National Cord Blood Inventory (NCBI) before the authorization expires. The Program, which includes the NCBI, provides access to live-saving bone marrow, peripheral blood stem cell (PBSC) and cord blood transplants to those living with one of the more than 70 blood cancers or blood disorders for which a transplant is the only curative option. Authorization for the Program and NCBI expires at the end of Fiscal Year 2020. We urge Congress to reauthorize these programs in the coming months to ensure that patients continue to have access to these life-saving transplants.
Since its inception in the mid-1980s, NMDP/Be The Match has been entrusted by Congress to operate the Program and has facilitated nearly 100,000 life-saving transplants to give patients with otherwise fatal blood cancers or blood disorders a second chance at life.
NMDP/Be The Match appreciates the leadership of the bill’s sponsor Rep. Doris Matsui (D-CA), a senior Democratic Member of the Energy & Commerce Committee, the Committee which oversees the work of the national registry, who has introduced the TRANSPLANT Act (H.R.4764), the Timely ReAuthorization of Necessary Stem-cell Programs Lends Access to Needed Therapies Act. We also appreciate the bipartisan support of the bill’s lead cosponsors Rep. Gus Bilirakis (R-FL) and Chellie Pingree (D-ME). Underscoring the bipartisan support of these programs, Rep. Chris Smith (R-NJ), the author of P.L. 109-129, which established the federal cord blood program and combined it with the National Bone Marrow Donor Registry, has introduced a similar bill as well.
For bone marrow transplant recipients like Kate Jauch, the support of lawmakers has meant a second chance at life. “When I was first diagnosed, all I could think is that my kids might grow up without a mother. I thought my husband would be raising our kids by himself. I’m amazed and forever grateful that my life-saving donors were found on the Be The Match Registry, which is part of the C.W. Bill Young Cell Transplantation Program, operated by NMDP/Be The Match. This saved my life,” said Jauch.
The TRANSPLANT Act would maintain current authorized funding levels for the programs to protect access to life-saving transplants for all patients, regardless of background, socioeconomic status, age, ethnic ancestry, or location. It also seeks to reinvigorate the federal Advisory Council on Blood Stem Cell Transplantation, which provides expert recommendations on issues impacting the timely delivery of bone marrow, cord blood, and peripheral blood stem cells to patients in need of transplants. Finally, the bill requires the Department of Health and Human Services to review the state of the science related to regenerative medicine for purposes of potentially including these innovative therapies in the outcomes database for the Program.
“Ensuring access to cellular therapy is critical for the patients we serve,” said NMDP/Be The Match Chief Policy Officer Brian Lindberg. “We encourage Congress to reauthorize these programs to expand the number of adult volunteer donors and cord blood units on the national registry so that every American who needs a transplant can find a match.”
Since 1986, the Program has experienced strong bipartisan, bi-cameral support and every five years Congress has consistently reauthorized the Program.
Caregiver, Caron Meyers, recalls how this Program began, “Back in 1983, my sweet little five-year-old daughter, Brandy, was diagnosed with Acute Lymphocytic Leukemia. Her only hope was a bone marrow transplant. Our family friend Congressman C.W. Bill Young would visit her and play Monopoly on her hospital bed. Sadly, my daughter’s match was never found. After her death, Congressman Young championed legislation to create the National Marrow Donor Program, which now operates the C.W. Bill Young Cell Transplantation Program. It has been thirty-two years since I lost my daughter. I take comfort in knowing her short life has helped to save thousands.”
“We commend Congress for recognizing the important work of the national bone marrow and cord blood program in providing hope to the more than 1.3 million Americans fighting blood cancers and other blood disorders to obtain the care they need,” said Lindberg. “Quick action by this Congress will protect access to life-saving bone marrow and cord blood transplants that can ultimately save lives.”
About National Marrow Donor Program/Be The Match
For people with life-threatening blood cancers such as leukemia and lymphoma, a cure exists. The National Marrow Donor Program(NMDP)/Be The Match connects patients with their donor match for a life-saving marrow or umbilical cord blood transplant, and works to identify and eliminate financial and other barriers faced by these patients. NMDP also provides patients and their families one-on-one support, education, and guidance before, during and after transplant.