Meet Jeff. Jeff joined the Be The Match Registry in hopes of helping a friend. Although not a match for his friend, Jeff was called in 2009 as a match for a 16-year-old girl named Kim, who was fighting acute lymphoblastic leukemia (ALL). Today, Kim is a vibrant young woman who recently graduated from college and is living her life to the fullest. Together, Jeff and Kim have fought to protect access to cellular therapies for the hundreds of other patients who need it.
Jeff and Kim were part of the 2013 Legislative Day. At the time, the federal government was debating “sequestration,” which could have meant big budget cuts for the C.W. Bill Young Cell Transplantation Program (Program), operated by Be The Match. The goal was to protect funding to the Program.
Kim and Jeff’s participation was crucial because it put real people impacted by the Program in front of Members of Congress to help them see tangible proof of this Program’s success. “We like to think that we made a pretty good team,” said Jeff. “As Kim would tell Congressional members and their staff, ‘I literally wouldn’t be standing here today without his stem cells.’ Then I’d follow-up with. ‘And I wouldn’t be here today had it not been for the recruiting efforts of Be The Match.”
It’s now 2018, and Jeff is still as passionate, pointing out, “Advocacy for the cause today is more important than ever because of the evolving nature of stem cell transplantation. New therapies and ongoing research have allowed these procedures to help so many more people, especially older folks who are diagnosed with a type of blood cancer or disorder. But the coverage for this same population hasn’t kept up with the advancements in medicine.” Approximately 1,200 Medicare patients annually need a cord blood or bone marrow transplant. “We need actionable attention to Medicare coverage for transplants now.”
Jeff has the best advice for advocates, “Use your own voice. Tell your story and engage on a personal level. It’s the real-world unscripted outreach that has the most impact."
You too could be a super advocate like Jeff. Learn how you can become a Be The Match Advocate, or reach out to us at legislation@nmdp.org.
