Congress: Save lives by fully funding America’s bone marrow registry

In their first month, the new Congress has faced challenges unlike any Congress before. While these obstacles continue to demand time and resources from members, health care programs needing congressional support are focused on the lives at stake.

We are one of those programs, and our patients need help.

{mosads}At the National Marrow Donor Program® (NMDP)/Be The Match®, we work every day to meet a single goal of fundamental importance – saving lives. We need Congress to stand with us and support our mission. Their job is clear – evaluate our program and our policy achievements measured in the most meaningful way imaginable, giving a second chance at life to more than 92,000 patients since our program’s inception. Today, ongoing discoveries and advancements of cellular therapy treatments have opened a new frontier for blood cancer and blood disease patients.

This year, lawmakers will be asked to fully fund one of the nation’s most successful public-private partnerships, the C.W. Bill Young Cell Transplantation Program, which is operated by the NMDP/Be The Match. With its creation in the 1980s, Congress promised patients with blood cancers (like leukemia and lymphoma) and other life-threatening diseases that they would have a pathway to find a potentially life-saving donor match. It’s a promise that has exceeded all expectations and continues to provide hope and cures here in the United States and around the world.

The result of this partnership shows in lives saved. To date, our Program has facilitated more than 92,000 blood stem cell transplants, bringing together patients in need of life-saving therapy with complete strangers motivated only by the desire to provide a cure for that patient’s disease.

Support from Congress has translated into the Be The Match Registry®—operated by the NMDP/Be The Match—with more than 20 million donors and 295,000 cord blood units, including 104,000 cord blood units accessible under the National Cord Blood Inventory (NCBI). Through international relationships, NMDP/Be The Match has access to more than 33 million potential donors and 765,000 cord blood units worldwide.

These numbers are impressive, but what they mean to patients is even more remarkable.

Each year, 12,000 Americans are diagnosed with life-threatening blood cancers and other blood disorders for which a blood stem cell transplant from an unrelated donor may be their only hope—or best chance—for survival.  Transplants are actually able to cure patients of their blood cancers, giving them a second chance at life.

Sadly, 70 percent of patients do not have a matched donor in their family. They turn to us for a second chance at life. It’s a situation fraught with uncertainties—particularly for patients of diverse ethnic backgrounds. Too often, racially and ethnically diverse patients are left with a less-than-optimal match, which can lead to less-than-optimal outcomes. As our country grows increasingly diverse, NMDP/Be The Match’s ability to provide the best possible genetic match for a searching patient grows increasingly more complicated.

We are ready to meet this need and save more lives, but we can’t do it alone. We are asking Congress to fully fund the curative work of the C.W. Bill Young Cell Transplantation Program so Americans diagnosed with blood cancers and blood diseases have timely access to donor matches. Increasing funding for FY2020 would enable the advancement of new and innovative methods of providing the best possible transplant to every patient in need, regardless of socioeconomic status, age, ethnic ancestry, or any other individually defining characteristic. Further, additional funding would allow implementation of innovative ideas to reduce time to transplant, meaning people can receive their transplant exactly when they need it.

Fully funding America’s bone marrow registry and its public cord blood banks is an issue with bipartisan support—something that seems less and less common with today’s deep partisan divide. I urge Congress to rally around this important patient care issue and fully fund these programs that will undoubtedly result in more American lives saved.

Brian Lindberg is chief policy officer, chief legal officer and general counsel for the National Marrow Donor Program/Be The Match®.