Should Federal Funding for the National Bone Marrow and Cord Blood Registry & Coordinating Centers be Reauthorized? (H.R. 4764)

What is H.R. 4764?

(Updated March 15, 2021)

This bill, known as the TRANSPLANT Act of 2019, would reauthorize the C.W. Bill Young Cell Transplantation Program, the “Be The Match” National Registry, and the National Cord Blood Inventory (NCBI). This renewed federal funding for the national bone marrow and cord blood registry and coordinating centers would ensure the continued provision of lifesaving transplants to treat diseases such as blood cancer, sickle cell anemia, and inherited metabolic or immune system disorders.

To advance science relevant to transplants, this bill would also:

• Seek 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; and
  
• Require the Dept. of Health and Human Services (HHS) to review the state of the science related to regenerative medicine for the purpose of potentially including these innovative therapies in the outcomes database for the C.W. Bill Young Cell Transplantation Program.

The HHS review, which would occur at least once every two years, would also include investigating the use of adult stem cells and birthing tissue for research and development of new therapies.

This bill’s full title is the Timely ReAuthorization of Necessary Stem-cell Programs Lends Access to Needed Therapies Act of 2019.

Argument in favor

This bill would reauthorize important bone marrow and cord blood donor matching programs that are essential to saving the lives of people with blood cancer, sickle cell anemia, and inherited metabolic or immune system disorders. Congress must reauthorize this funding to ensure that patients remain able to access lifesaving transplants.

Argument opposed

The federal government shouldn’t be in the business of funding transplant registries if a private-sector solution that doesn’t rely on taxpayer funding can be implemented instead. In an era of ballooning federal debt and growing bureaucracy, it would be best to either privatize the programs this bill would fund or establish them as charities run on public donations rather than taxpayer funds.

Impact

Patients with blood cancer, sickle cell anemia and inherited metabolic or immune system disorders; national bone marrow and cord blood registry; C.W. Bill Young Cell Transplantation Program; National Cord Blood Inventory; and federal funding for the C.W. Bill Young Cell Transplantation Program and National Cord Blood Inventory.

Cost of H.R. 4764

A CBO cost estimate is unavailable.

Additional Info

In-Depth: Sponsoring Rep. Doris Matsui (D-CA) introduced this bill to ensure the continued availability of lifesaving transplants for blood cancer, sickle cell anemia and inherited metabolic or immune system disorders:

“For the 1.3 million Americans fighting painful and potentially life-threatening blood cancer or bone marrow disorders, a successful transplant brings hope and a second chance at life. Reauthorizing the C.W. Bill Young Cell Transplantation Program, the ‘Be [the] Match’ National Registry, and the National Cord Blood Inventory are critical in connecting patients with donors and funding life-saving research to eradicate these devastating diseases. I am proud to introduce the TRANSPLANT Act so we can continue to support patients in need and those willing to give the gift of life.”

Lead Republican cosponsor Rep. Gus Bilirakis (R-FL) adds:

“This bill is about providing hope to those who are struggling with life-threatening illnesses.  This federal program provides critical support in the advancement of research for better treatments and the infrastructure necessary to organize registries which help ensure transplant patients have access to life-saving procedures.  Its reauthorization is vital, and I hope our colleagues will join us in expediting passage of this important legislation.”

Original cosponsor Rep. Chellie Pingree (D-ME) observes, “Every year, more than 17,000 people are diagnosed with illnesses where bone marrow and cord blood donations can quite literally save their lives.”

The National Marrow Donor Program (NMDP), which operates the C.W. Bill Young Cell Transplantation Program, including Be The Match Registry, supports this legislation. NMDP/Be The Match Chief Policy Officer Brian Lindberg says:

“Ensuring access to cellular therapy is critical for the patients we serve. We encourage Congress to reauthorize [the C.W. Bill Young Cell Transplantation Program and National Cord Blood Inventory] 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…. Quick action by this Congress will protect access to life-saving bone marrow and cord blood transplants that can ultimately save lives.”

This legislation passed the House Committee on Energy and Commerce by voice vote with the support of 51 bipartisan House cosponsors, including 39 Democrats and 12 Republicans. 

Of Note: The National Marrow Donor Program (NMDP), established in 1986, connects patients with their donor matches for life-saving marrow or umbilical cord blood transplants. It also works to identify and eliminate financial and other barriers faced by patients, thereby helping to ensure that all patients, regardless of financial status, are able to access life-saving treatments. Finally, the NMDP provides patients and their families with one-on-one support, education, and guidance before, during and after transplant and collects data for each transplant to help improve patient outcomes.

The NMDP’s national registry includes over 20 million potential bone marrow donors and over 254,000 units of umbilical cord blood, including more than 100,000 National Cord Blood Inventory program (NCBI) units.

Since its inception, the NMDP has enjoyed consistently strong bipartisan, bicameral support. Congress has consistently reauthorized the program every five years.

Media:

• Sponsoring Rep. Doris Matsui (D-CA) Press Release
  
• Sponsoring Rep. Doris Matsui (D-CA) Dear Colleague Letter
  
• The National Marrow Donor Program (NMDP) Press Release (In Favor)