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Last Build Date: Mon, 16 Apr 2018 18:51:52 +0000

 



Volunteer Spotlight: Justin and Kristin Akin

Mon, 16 Apr 2018 18:51:16 +0000

For Kristin and Justin Akin, being a volunteer Be The Match® courier lets them not only act as a bridge between patient and donor, but also allows them to honor the memory of their two sons, Matthew and Andrew. In September 2007, three-month-old Andrew was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH) and needed a marrow transplant. Kristin and […]

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Car-T Affordability and Access Alert Issued by ICER in Recent Report

Thu, 05 Apr 2018 15:29:32 +0000

The Institute for Clinical and Economic Review (ICER) recently released a summary report analyzing the clinical and cost-effective benefit of two emerging CAR-T therapies approved by the FDA in 2017:  tisagenlecleucel (Novartis) and axicabtagene ciloleucel (Kite/Gilead). The report concluded that there was a “net health benefit compared to standard chemoimmunotherapy” as well as stating that […]

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NMDP Advisory Group on Barriers to Transplant (AGBT) Update

Thu, 05 Apr 2018 15:20:52 +0000

The National Marrow Donor Program (NMDP)Advisory Group on Barriers to Transplant (AGBT) recently met for a full day during Tandem this past February in Salt Lake City, Utah.  This group of accomplished and influential national leaders serves NMDP’s Board of Directors by addressing system issues that could be improved through the collaborative efforts of the […]

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Upcoming Conference: Timely Referrals Presentation at OptumHealth Conference

Thu, 05 Apr 2018 15:17:27 +0000

Dr. Linda Burns, Vice President and Medical Director for the National Marrow Donor Program, will be speaking at the OptumHealth Education “Transplantation: Essentials of Oncology, Solid Organ and Blood/Marrow Transplant Management for the Health Care Team” conference to be held in April at The Scott Resort & Spa in Scottsdale, Arizona on April 15-16.  The […]

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April 2018 Conference Updates

Thu, 05 Apr 2018 15:15:13 +0000

Executive Recap: AHIP Health Policy Conference in Washington D.C. March 6-8 This year’s National Health Policy Conference, held in Washington D.C. by America’s Health Insurance Plans, was an event for the ages!  The conference featured speakers and panelists well-known and influential in the health industry, including the HHS Secretary Alex Azar, FDA commissioner Scott Gottlieb, […]

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Help Increase Funding for the Registry Protect Access to Cellular Transplant (PACT) Act

Tue, 03 Apr 2018 19:21:42 +0000

Our efforts to protect access to life-saving transplant for Medicare recipients is gaining momentum. Currently we have 20 co-sponsors! This is in large part thanks to your advocacy efforts. While we had hoped to have this legislation passed before the April rule-making decision that provides guidelines on Medicare reimbursement, we fell short of our goal, […]

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

Tue, 03 Apr 2018 17:49:56 +0000

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. […]

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Volunteers advocate for Be The Match on Capitol Hill

Tue, 03 Apr 2018 17:41:02 +0000

Abby West offers this advice about navigating two full days of meetings with lawmakers on Capitol Hill: “Wear comfortable shoes!” On March 5th and 6th, Abby met with 17 federal lawmakers or their legislative aides to promote Be The Match’s mission to ensure that cellular transplantation is available for everyone needing it. In addition, Abby […]

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BMT Journeys: An invitation to transplant recipients and their caregivers to write about and share their experience

Fri, 23 Mar 2018 19:55:43 +0000

Medicine may heal the body, but art and writing can heal the soul. Reflective writing and creating art about your experience with cancer may help you cope with your recovery. For many people, writing and art provides a way to express deep thoughts and feelings about an experience, or make meaning out of an experience. […]

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When GVHD just won’t go away, ECP may be the answer

Tue, 06 Mar 2018 18:06:39 +0000

Extracorporeal photopheresis (ECP) is a potential treatment option for some transplant recipients with graft-versus-host disease (GVHD). It’s not a commonly known treatment and it’s more complicated and time-consuming than taking a pill. But it was the answer for Jason, a transplant recipient who endured several years of off-again, on-again bouts with chronic GVHD before ECP […]

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