Behind the numbers of 100,000 bone marrow transplants and counting
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We live in a world of numerical benchmarks. Where numbers transcend the simple quantity they represent and instead become powerful markers for our society. We need look no further than Washington, D.C., to see how critical numerical benchmarks are in the way in which we govern ourselves: 268 electoral votes to win the presidency, 218 seats to control the House, 67 votes to override a presidential veto, 60 senators necessary to overcome a filibuster, and the list goes on. Sometimes, however, numerical benchmarks take on a much more human and personal significance. Sometimes numerical benchmarks are more than just ways in which we organize our society, sometimes they represent the accumulated differences between certain death and the hope of life.

In 2019, National Marrow Donor Program® (NMDP)/Be The Match® accomplished a feat that no one could even imagine when we began over 30 years ago – 100,000 bone marrow transplants performed. This milestone is even more awe inspiring when you consider that only 50,000 transplants were facilitated over the first 25 years. It took just over seven years to double that number.

This is more than just a number, more than just an extraordinary achievement, each one of those 100,000 bone marrow transplants represents individuals with personal stories. Stories of life and death, of devastating sadness and overwhelming joy, and powerful reminders of the critical nature of the work of the entire transplant community.

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Stories told by people like Katie and Jon Lanza. At just four-months-old, their son Nolan was diagnosed with a rare and often fatal genetic disorder, hemophagocytic lymphohistiocytosis (HLH). Symptoms of HLH include fevers, an enlarged spleen, low blood counts and liver abnormalities.

His only hope for survival was a bone marrow transplant.

That’s when Be The Match Registry stepped in, a match was found, and little Nolan had a transplant in May 2018, which saved his life.

As a physician, I do more than simply read about these powerful personal stories, I experience them first hand through my own patients. Patients like Lisa Maxson, a mother of three who found herself fighting for her life when diagnosed with acute myeloid leukemia at the age of 28. I understand all too well that life or death for that one patient I am treating can come down to finding that one donor. Fortunately for Lisa, that match was found and her life continues to be a testament to the Be The Match Registry.

As we celebrate this impressive benchmark, we honor the individuals and families who make up those 100,000 bone marrow transplants and the doctors, nurses, medical professionals and caregivers who are such an important part of this process. We also honor the visionaries who came before us. The men and women who, when told a national registry would fail, never gave up hope. Their vision became a reality and through collaboration, commitment, and compassion, we can now say that 100,000 volunteer donors have stepped up to help a stranger and millions more have joined the Be The Match Registry.

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Be The Match Registry also stands out as an outstanding example of a highly successful public-private partnership between the federal government, Congress, NMDP, volunteers, patients, and families, our medical providers, and researchers. Showing that when we work together, we can accomplish almost anything.

Our work, however, is not done. We know that innovation must happen faster than ever, which is why we are not only celebrating 100,000 bone marrow transplants facilitated, we are also celebrating two significant acts of Congress last year that will help us achieve the next 100,000 transplants.

For the first time ever, Congress fully funded the C.W. Bill Young Cell Transplantation Program (Program), operated by NMDP/Be The Match, and gave Medicare patients expanded access to cellular therapy. Accomplished through bipartisan support, members of Congress stood up for blood cancer and blood disease patients in need of a donor and modernized Medicare reimbursement to ensure equal access.

Full funding by Congress means more donors will be added to the Be The Match Registry and more donors means more hope for the patient diagnosed with blood cancer or blood disease every three minutes of every day.

In addition to funding, the Patient Access to Cellular Transplant (PACT) Act (H.R. 2498/S. 1268) was signed into law in December. By fixing a reimbursement issue, this legislation expands Medicare beneficiaries’ access to bone marrow, peripheral blood stem cell, and cord blood transplants – keeping families together by giving these patients the opportunity to access this life-saving treatment.

As survival rates from leukemia, lymphoma, and other forms of blood cancer soar to all-time highs – thanks in part to rapid advancements in medical science and efforts from committed groups like NMDP/Be The Match – we applaud Congress for stepping up and doing its part.

For transplant physicians like me, our focus is on individual patients. We work to help each person who comes to us hoping for a healthy future. By passing full funding and the PACT Act, Congress has helped thousands of patients at once with the stroke of a pen.

On behalf of the 100,000 patients who have received a transplant and for the next 100,000 whose survival will depend on cellular therapy, we say thank you to the members of the House and Senate for their vision and unwavering support.

Dr. Steven Devine is the Chief Medical Office for the National Marrow Donor Program/Be the Match Registry.