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The TRANSPLANT Act will renew the C.W. Bill Young Cell Transplantation Program which includes the Be The Match Registry

July 29 2020

Today, National Marrow Donor Program (NMDP)/Be The Match Chief Policy Officer Brian Lindberg testified in an Energy and Commerce Subcommittee hearing on Health regarding the renewal of the C.W. Bill Young Cell Transplantation Program.

NMDP/Be The Match operates this federally authorized Program that matches unrelated volunteer bone marrow donors and cord blood units with patients who have been diagnosed with leukemia or over 70 otherwise fatal blood disorders and diseases. Under contract with the Department of Health and Human Services/Health Resources & Services Administration, the Program, which includes the National Cord Blood Inventory (NCBI), is charged with providing equal access for all patients in need of a life-saving cellular therapy.

Another of the Program’s primary missions is coordinating the delivery of bone marrow domestically and internationally to patients in the United States and abroad. NMDP/Be The Match marked a major milestone in its exceptional history last December with the celebration of facilitating 100,000 transplants.

H.R 4764 is a simple five-year reauthorization of this life-saving Program. The Program has been reauthorized four times over the course of its history, with strong bipartisan support.

Never has the need to reauthorize the Program on time been more important than now, during the COVID-19 pandemic and in a time of rapidly evolving science and innovation in cell therapy. Restrictive domestic and international travel bans, border closings, and the declining availability of scheduled commercial passenger aviation service on international and domestic routes have created near catastrophic barriers to NMDP/Be The Match’s ability to facilitate timely transplants for patients in dire need. Those patients, who are amid treatment protocols, suffer from conditions that have deteriorated to the point that a bone marrow transplant is the only course of treatment that will save their life.

That said, despite the pandemic, since March, NMDP/Be The Match has thus far been able to mitigate disruption and has delivered over 2,500 life-saving therapies to patients who are relying on them, without missing a single delivery. It has been able to do that, in part, because of its designation in Federal law as the nation’s bone marrow registry, a designation that will lapse on September 30 without quick action by the Committee and Congress. Thanks in large part to the authorizing statute, NMDP was:

  • Granted a waiver in March from the Director of the Centers for Disease Control to the European Travel Ban that was issued by the President. The waiver was issued in “the national interest” to allow international bone marrow couriers to travel to and from the United States to deliver cellular products from abroad to U.S. patients.
  • Received CISA classification by the Department of Homeland Security as Critical Infrastructure for the Program to include “Donors of blood, bone marrow, blood stem cell, or plasma, and the workers of the organizations that operate and manage related activities.”
  • Authorized by a subcontract with the Department of Health and Human Services to use private aircraft donated to the government, renewed on a monthly basis, to deliver life-saving cells to patients when commercial flights were not available.
  • Able to access support from U.S. Embassies and Consulates to liaison with host governments to facilitate timely travel authorizations for individual donor and courier travel and to coordinate private and/or humanitarian flights in and out of countries that have closed their borders to international travel.
  • Granted temporary clearance from U.S. Customs and Border Protection that ensures bone marrow and blood stem cells coming from Canada to American patients will have uninterrupted transport into the United States.
  • Quickly applied for and received OMB approval to revise data collection instruments on behalf of the program to evaluate impacts of COVID-19 on patients.

As Lindberg testified, the ability of NMDP/Be The Match to call upon Federal partners in these extreme circumstances, and the organization’s standing in the eyes of foreign governments, could

“For 30 years, National Marrow Donor Program/Be The Match has answered the call to operate the nation’s registry to save lives through cellular therapy. Renewing the C.W. Bill Young Cell Transplantation Program means that our work today will help us care for patients in need tomorrow,” said Lindberg. “Over the course of the Pandemic, NMDP/Be The Match has gone above and beyond to facilitate over 2,500 transplants since March without missing a single delivery. Not renewing this Program risks negatively impacting this level of care.”

About Be The Match®

For people with life-threatening blood cancers—like leukemia and lymphoma—or other diseases, a cure exists. Be The Match connects patients with their donor match for a life-saving marrow or umbilical cord blood transplant. People can contribute to the cure as a member of the Be The Match Registry®, financial contributor or volunteer. Be The Match provides patients and their families one-on-one support, education, and guidance before, during and after transplant.

Be The Match is operated by the National Marrow Donor Program® (NMDP), a nonprofit organization that matches patients with donors, educates health care professionals and conducts research through its research program, CIBMTR® (Center for International Blood and Marrow Transplant Research®), so more lives can be saved. To learn more about the cure, visit BeTheMatch.org or call 1 (800) MARROW-2.