June 19 is World Sickle Cell Awareness Day

Posted June 13th, 2017 by Be The Match and filed in News
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Constance, marrow transplant recipient

Did you know: in the United States, sickle cell disease (SCD) affects about 70,000-100,000 people. It is most common among African Americans and Hispanics, but is also found in other ethnic groups. The only known cure for SCD is a blood or marrow transplant, which replaces the patient’s diseased blood-forming cells with healthy ones from a matched donor.

SCD is an inherited disease, named for the crescent- or sickle-shaped red blood cells it causes. These defective cells can get stuck in small blood vessels, blocking them. This keeps red blood cells and the oxygen they carry from getting to all parts of the body. Complications of SCD can range from mild tiredness (fatigue) to more severe symptoms such as strokes, heart attacks, infections, organ damage and repeated episodes of severe pain.

A blood or marrow transplant is the only known cure for SCD. And because SCD disproportionately affects African American and Hispanic patients, there is urgent need to add more individuals of African American and Hispanic heritage to Be The Match Registry.

A legislative team from Be The Match will be in Washington D.C., for World Sickle Cell Awareness Day, advocating for increased awareness of SCD and the struggles patients and their families face, as well as secure additional funding to help more patients live longer, healthier lives.

Meet Kami, a courageous young girl living with sickle cell. Help her find a donor by watching and sharing her story

You can help ensure older patients get the transplant they need

Posted April 18th, 2017 by Be The Match and filed in News
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The number of older patients receiving a marrow transplant has increased significantly in recent years. But due to Medicare payment policies, transplant centers are losing thousands of dollars on each Medicare beneficiary they treat making it difficult for them to continue performing transplants for these patients.

Ed, marrow transplant recipient

In 2015, 138 hospitals around the country provided this life-saving therapy to nearly 1,200 Medicare beneficiaries. Patients like Ed, who received his transplant when he was 68 years old.

“Our oldest grandchild was 6 years old and the youngest was just 9 months when I had my transplant,” commented Ed. “I’ve been able watch them grow up and they’ve had the chance to know their grandfather as a person, not a picture.”

Ed says his transplant has given him the gift of life and the gift of time. And he’s making the most of it. In addition to spending time with family, he is very active in his church and has volunteered over 400 hours with Be The Match: connecting with patients, transplant centers and legislators.

“After my transplant, I’m more aware of the issues which people [like me] can face, and I’m trying to give back,” said Ed.

Medicare patients need your help
We need your help to ensure patients who are Medicare beneficiaries have the same access to transplant as those who have commercial insurance.

What Medicare reimburses hospital transplant centers does not cover the costs of searching for a donor and obtaining their cells. If CMS does not reform the current payment policy for transplant hospitals will not be able to keep treating Medicare patients, like Ed.

This spring, the Centers for Medicare and Medicaid Services (CMS) will determine the Medicare payment policy for inpatient transplants for the coming year.

Please submit a comment letter to CMS urging them to adequately reimburse for marrow transplant so patients can get the care they need. You can customize our pre-written letter and send it directly to the decision-makers at CMS.

We need comments from passionate people like you to help CMS understand how important this is. Thank you for your support!

Interested in legislation and policy changes that affects transplant patients? Learn more at BeTheMatch.org/advocacy.

Why I do what I do for Be The Match

Posted September 27th, 2016 by Be The Match and filed in Donor Stories, News
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As told by Jeff, donor and advocate

“Save this girl’s life and I’ll be an advocate to the cause for the rest of mine.” This was the short prayer whispered just before I was anesthetized to harvest my bone marrow that was perfectly matched to a sixteen-year-old girl fighting leukemia. Eight years later, I’m please to share that my recipient, Kim is living life to the fullest with my adopted immune system. 100% engrafted and cancer-free!

Within a few days of the procedure life returned to normal, but my appreciation for it was different. Somewhere out there was a young lady fighting for her life and I knew that her family was asking themselves the same questions that I was. Were my cells good enough? What would happen if they weren’t? At the very least I knew that the procedure would give this family something that they had longed for, which has been confirmed by countless other families fighting a blood cancer. For many a bone marrow transplant can be a cure, but for all it provides hope.

To me, a bone marrow transplant is the perfect fusion of fate, science and miracle. Fate, to know that a compatible stranger chose to join a bone marrow registry; science, to facilitate the process; and miracle, to know that these life generating transplanted cells can alter the course of another person’s mortality. Believing this – I had to get involved further.

I started my advocacy at marrow drives, lending a hand to dismiss the fears about the donation process. As we all benefit from talking to others with firsthand experience; attending these drives helped educate and answer questions of those interested but concerned about the procedure. Several people join the registry, as I did, for someone they know who is in need of a transplant. At these drives, I help folks see the “Pay It Forward” concept. Although you may not be a match for the person you know, you could be for someone else in need, just as another person joining at another drive somewhere out there may be a match for your acquaintance.

I am involved with the CIBMTR (Center for International Blood and Marrow Transplant Research) which is the research program of Be The Match. As a consumer advocate, I’ve participated over the last five years helping to translate information, such as outcomes from a clinical trial into a readable format for the typical lay person to understand. It was an honor to be asked this past year to co-chair this advocacy group.

I’m also very proud of the money raised by co-chairing a local Be The Match Walk+Run event for the past three years. These events bring together survivors, caregivers, patients and donors to celebrate victories, honor those lost and help recruit new potential donors to the registry.

Finally, I take the most pride in my volunteering efforts as a stem cell courier. The transplant process is a logistical orchestra of physicians, scientists, lab techs, collection center personnel and transplant hospital staff all coming together for a patient in need. It is a privilege to hand-carry these coolers containing someone’s “second chance” from their altruistic donor to their intended recipient. A trained volunteer courier is as close as it gets to being Santa Claus.

If you read this chances are you’re already somehow involved with the cause. Mine are but a few of the many ways to help and I encourage all to engage. Maybe it’s writing to congressional members in support of NMDP/Be The Match’s legislative activities; or it’s reaching out to a local recruiter and helping in your community. Whether you’re a caregiver, a long term survivor or a fellow donor – we all have unique experiences that are vital to the next patient in need. As for me, I’ll keep holding up my end of that prayer.

Cord blood transplant recipient travels to Washington, D.C., on behalf of Be The Match

Posted February 27th, 2015 by Be The Match and filed in News
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starting to look like myself

This March, Maryland resident, Linda, will be one of seven transplant advocates who will travel to Capitol Hill on behalf of the National Marrow Donor Program® (NMDP)/Be The Match®. Their mission: Urge lawmakers to increase vital funding to help more patients survive blood cancers and other diseases.

Linda, and the six other patient and donor advocates, will ask Congressional members to approve a small increase in funding for the NMDP/Be TheMatch, which operates the national Be The Match Registry® through a successful public-private partnership with the federal government.

Increasing the federal appropriation would allow the NMDP/Be The Match to recruit more donors and further expand the diversity of the registry. Federal funds also go toward helping patients navigate the complexities of the health care system when preparing for transplant, as well as supporting research to discover and apply the best therapies, and improve patient outcomes.

In 2007, Linda was diagnosed with acute lymphocytic leukemia (ALL), a type of cancer in which a certain type of white blood cells prevents the body from making enough red blood cells and platelets. Linda’s doctors told her that a bone marrow transplant was her only chance of a cure, but like most patients, the mother of three young children did not have a donor match within her family.

Linda’s medical team turned to the Be The Match Registry® in hopes of finding an unrelated donor. Ultimately, Linda’s doctors determined that an umbilical cord blood transplant was her best treatment option, and after months of waiting, Linda received her life-saving transplant in July 2008.

most recent

That’s why Linda and her fellow advocates also will ask legislators to increase federal funding for the National Cord Blood Inventory (NCBI). The increase would support efforts to improve patient access to innovative, life-saving transplants, including the recruitment of more minority mothers to donate their baby’s cord blood—giving more patients like Linda a second chance at life.

To learn more about our work on the Hill and to get involved, visit BeTheMatch.org/Advocacy. 

A Welcome From Dr. Chell

Posted December 6th, 2012 by Be The Match and filed in News
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From our Be The Match® Be The VoiceTM Advocacy E-Newsletter, subscribe now.

For 25 years, passionate supporters of the National Marrow Donor Program® (NMDP) and Be The Match® have helped our organization achieve some incredible milestones. With your help, we have facilitated more than 50,000 transplants, and we’ve added more than 10 million people to the national Be The Match Registry®. But, we are still striving toward our ultimate goal: finding a matching donor for every patient in need of an unrelated transplant.

To help achieve this mission, we’ve recently updated our Legislative Relations Advocacy Action Network. It’s full of materials that will help you inspire the continued legislative support that Be The Match needs to save more lives.

You can help shape future policies by simply sharing your personal story with your local legislators, inviting your district’s representatives to local donor registry drives, or involving them in your region’s Be The Match Walk+Run®. We also encourage you to connect with Be The Match and your local legislators through social media channels. These grassroots initiatives are an easy way to help ensure that the NMDP and Be The Match continues to receive much-needed federal funding.

I’m confident that we can achieve our mission of helping all patients in need, knowing that we have such dedicated advocates.

If you have questions about these tools or general questions about the Advocacy Action Center, please contact our advocacy team at legislation@NMDP.org and 202-626-8668.

Jeffrey W. Chell, M.D.
Chief Executive Officer, NMDP and Be The Match