Super Star Advocate: Becky Tombleson

Posted February 20th, 2018 by Be The Match and filed in Volunteer Stories
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“Advocacy and policy is daunting, but not impossible and I’m buoyed by the sense that I can make a lasting impact in laws and policies that effect patients and their access to care.”

Becky, legislative advocate

Becky Tombleson is a clinical pharmacist with over eight years of experience at Moffitt Cancer Center in Florida and has worked in the Blood and Marrow Transplantation program for most of those. Becky got involved with the National Marrow Donor Program® (NMDP)/Be The Match® because, “as the years go by, one thing remains critical to my patients and their outcomes: access to care. That care takes on many shapes as a prescription that gets denied or a transplant that gets delayed. I have become passionate about access to care watching our patients struggle with financial burdens that complicate their lives and inhibit their outcomes. Our patients are fortunate to have vocal advocates and allies in NMDP and Be The Match.”

Last year Becky traveled with the American Society of Blood and Marrow Transplantation (ASBMT) and the NMDP in an effort to garner support from our lawmakers in Washington for the Protect Access to Cellular Transplant (PACT) Act, HR 4215. When asked about her experience and advice for new advocates, she said, “at first, I was very intimidated! I like to follow policy in Washington closely and as much as I tried to calm myself down, our lawmakers still seem like celebrities to me. Once I was able to visit with a few, I realized I was able to play an important role in their education and how much of an impact that makes on our patients. Our lawmakers are very educated in a number of ways but lack the insight I have as a clinical pharmacist – I found them grateful to learn of the impact access to care has on our patient’s lives.”

Becky is passionate about policy change because, “as time has progressed, I see advocacy and policy as a way to reach out beyond my institution, to patients I will never meet, and hopefully make the process an easier one for them. There are so many ways to impact patient care and I think my focuses have just gone a bit broader than before.”

Many people have never met a lawmaker before, but don’t worry because Becky has great advice. “Think through what you want to say and what is likely to leave a lawmaker with the clearest sense of what you do, what the patient need is, and how the legislation you’re discussing can make that a reality. Our lawmakers care about the interests of their constituents and want ultimately, something that will be beneficial to their lives. Our lawmakers are also involved in many different initiatives and bone marrow transplant is a complicated issue that many people don’t understand that lack experience with it. Also, try to stay calm if you’re easily dazzled by some lawmakers like I was!”

Becky also took the time to get others involved. “I was very fortunate to collaborate at Moffitt Cancer Center with our Federal Legislative Affairs Director. We were able to discuss in detail the PACT Act and how it could not only benefit our patients, but others as well. We both agreed that our institution sets a high standard in caring for patients that depend on access to transplant and that should be communicated to our lawmakers. We were thrilled to see the support we had and the impact that has had on the PACT Act. As one of the most nationally renowned cancer centers in America, we knew a letter of support or call could make all the difference.” And it did. Within a week Becky and her efforts added two co-sponsors!

You too can be a super star like Becky! If you want more information on how you can be a volunteer leader and super advocate, email Jess Knutson.

Protect access to transplant for patients like Mark

Posted December 4th, 2017 by Be The Match and filed in Patient Stories
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Mark, transplant recipient, with his wife

In 2008, after feeling tired constantly and experiencing night sweats, Mark knew these symptoms were a red flag and visited his doctor. Blood tests revealed his counts were dramatically low – which indicated lymphoma. Additional tests revealed that Mark had mantle cell lymphoma, a very rare form of lymphoma that is classified as incurable. A bone marrow transplant would be Mark’s best hope of keeping his disease in remission.

Mark started six rounds of chemotherapy to go into remission while his doctors at the University of Michigan searched the Be The Match Registry® to find him a match. He had five perfect matches. Mark’s second perfect match stepped up to be his life-saving donor. Throughout his transplant journey, Mark said he felt fortunate to be able to focus on recovery and healing instead of worrying about his insurance coverage.

The cost of transplant can be up to $200,000. And most often, transplant centers are only reimbursed approximately $65,000 to treat Medicare patients. This creates an access barrier for patients to receive the life-saving treatment they need.

“Lymphoma can come back,” he said. “I visit patients who are in their 70’s and getting transplants. I have seen the bills without insurance – without Medicare coverage, people could not do it.”

Please urge your Members of Congress to co-sponsor this upcoming legislation. Medicare beneficiaries like Mark and the patients he volunteers with need your help: be the voice to save a life.