A donor-recipient meeting helps raise awareness among D.C. lawmakers

Posted April 3rd, 2018 by Be The Match and filed in Donor Stories, Patient Stories, Volunteer Stories
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On March 20, in Washington, D.C., a first-time meeting between a marrow transplant recipient and her donor brought about tears of joy and forged a life-long connection between two women. But the meeting also raised awareness about how Congressional support is vital to help future patients get the marrow or cord blood transplants they need.

Be The Match arranged the first-time meeting between transplant recipient Kate Jauch and her donor, Kyndess Eaggleston, who was identified as the best match for Kate from among the more than 19 million volunteer donors listed on the Be The Match Registry.

The day after their emotional meeting, both women shared their experiences with Members of Congress at several legislative briefings arranged by Be The Match. Kyndess and Kate each spoke about the importance of advocacy, program funding, and access to transplant for Americans with blood cancer and other blood disorders.

“I was fortunate to have found a match, and we must continue to grow the registry for those who will need a transplant in the future,” said Kate. “This is why we are urging policymakers to protect access to transplant through increased program funding.”

At the briefings, both women spoke to Members of Congress and their legislative aides about how increased funding is needed to optimize access to marrow transplantation and to improve outcomes, particularly for Americans who might have difficulty finding a match or for patients where a transplant is their only chance for a cure.

“It was very moving to meet Kate in person and know that this is someone I will forever be bonded to through the Be The Match Registry,” said Kyndess. “I encourage anybody eligible to sign up to be a donor. They make the process easy and knowing you could potentially save a life is incredible.”

How you can advocate to help patients who need transplants

The first-time meeting between Kyndess and Kate raised awareness among the many Member of Congress who attended the briefings that for Medicare beneficiaries, funding for bone marrow transplants fall short of the actual costs of care.

Advocates such as Kyndess and Kate are urging Congress to act swiftly to pass HR 4215, legislation to ensure that future Medicare payment for cellular transplant reflects the true costs of treatment, including cell acquisition, transplant and recovery for older Americans diagnosed with blood cancers or other disorders.

As described on the Be The Match legislative advocacy webpage, HR 4215 will reform reimbursement to hospitals for the cell acquisition costs using a methodology similar to that used for solid organs. This policy would have a very small impact on Medicare’s total spending, but would ensure patient access to life-saving care.

Learn more about how you can advocate on this and other issues affecting access to live-saving transplants.

Abby’s Donation Story

Posted October 8th, 2013 by Be The Match and filed in Donor Stories
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Abby-203pxAbby first learned about Be The Match® at work in 2011 through her boss. She was asking others to register for a friend who had been diagnosed with leukemia. Wanting to help, Abby joined the Be The Match Registry®. Unfortunately, she was not a match for her boss’ friend, but just three months later, she got a call telling her that she was matched to a 15-year-old boy in California. Abby donated marrow, extracted from the pelvic bone through an outpatient surgical procedure, to her recipient six months later and describes her journey as “the best experience ever!”

How did friends and family react?

Abby felt a mix of emotions when she told friends and family she was going to donate marrow. Although her loved ones were excited about her decision, they were also nervous and scared. They had many questions to be answered, and they wanted to make sure that the procedure would be safe for her.

Abby educated her husband and two children about the procedure in hopes that they would understand how determined she was to help. She was able to ease their fears, along with those of her friends and family, and their support became a crucial factor to the success of her donation.

Abby’s donation journey

Abby had one main worry when going through with donation. “My main concern was, ‘will I have enough marrow?!’” said Abby. Being very petite, she was afraid that her body would not be able to give enough marrow to help cure her recipient. Abby’s donor center, doctors, and loved ones all reassured her that everything would go well, and her procedure was a complete success! “The doctors, nurses, and Be The Match always answered any questions and or concerns I had,” said Abby.

After donation, Abby experienced some side effects. These side effects consisted of nausea, pain, fatigue and weakness. However, they did not last long and Abby was shortly back to her regular routine. Looking back on her experience, Abby explains that she did not realize how much the donation would change her.

Connections with Abby’s recipient

Recently, Abby was able to get in contact with her recipients mother*. They talked for more than two hours, sharing each other’s journey, what their lives are like now, and learning more about one another’s family. Abby was also able to hear the great news, first hand, that her recipient is now 95% recovered and is doing extremely well. Both families are looking forward to meeting in the future, and share a connection that cannot be replaced. “Emotionally, it was an amazing experience. I was left with a great feeling inside of me that will last a lifetime.”

Note:

*A donor and patient may exchange contact information if the patient’s transplant center rules allow, it has been at least one year since transplant, and both donor and patient consent.