Volunteer Spotlight: Justin and Kristin Akin

Posted April 16th, 2018 by Be The Match and filed in Volunteer Stories
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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.

The Akin family

In September 2007, three-month-old Andrew was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH) and needed a marrow transplant. Kristin and Justin had their oldest son, Matthew, tested to see if he would be a suitable match, but he was not.The Akin’s turned to Be The Match to find an unrelated donor. Unfortunately, there was not a suitable adult match for Andrew on the Be The Match Registry®, but there was a cord blood match.

At six-months-old, Andrew received his first transplant.

Sadly, two months after his transplant, Andrew relapsed. His doctors once again searched the registry. Kristin and Justin were elated that this time there was an adult match. Andrew had his second transplant, just before his first birthday.

“I vividly remember being in the hospital and the coordinator walked into our room, letting us know that the blood stem cells had safely landed,” said Justin.

Shortly after the transplant, doctors informed the family that once again, it was not successful.

Kristin and Justin had their older son, Matthew, further tested, fearing he may have held the mutation as well.

The results were unimaginable.

Matthew, while healthy, also carried the HLH mutation and would eventually get the disease. Kristin and Justin found themselves in an unthinkable situation. Andrew was preparing for his third transplant and Matthew for his first.

Tragically, Andrew passed away in September 2009 at the age of 2. Matthew passed away months later in May 2010 at the age of 5.

Filled with grief, Kristin and Justin channeled their energy into helping others. They became volunteer couriers so they can help other families.

“Every time I go on a trip, it conjures up a lot of emotion,” Kristin said. “People ask me, ‘Why do you want to do this?’ I tell them Be The Match gave us hope. I am eternally grateful to Be The Match for trying to save my children’s lives.”

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

Posted April 5th, 2018 by Be The Match and filed in Payer Policy
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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 both therapies are determined to be “cost-effective in the long term for the specified indications,” (adults with Non-Hodgkin’s Lymphoma and pediatric patients with B-ALL).  However, ICER issued an “affordability and access alert” as part of the final report since findings showed that “the added health care costs may be difficult for the system to absorb over the short term” and that “only 38% of the eligible population of 5,900 could be treated before crossing the affordability threshold.”

The report concludes with key policy recommendations to address affordability and access.  Below is a sample of those policies that should be implemented by payers:

  • Manufacturers, public and private insurers, and providers should meet prior to FDA approval to address uncertainty regarding payment arrangements, a step that will reduce unnecessary delays in delivering care to patients and financial uncertainties for insurers and providers.
  • Value-based pricing should be viewed in context with the affordability of a new treatment based on the size of the population eligible to receive the therapy.
  • Manufacturers and insurers should ensure that outcomes-based pricing arrangements are linked to meaningful clinical outcomes assessed with sufficient follow up.

For additional information, please see the full report.

NMDP Advisory Group on Barriers to Transplant (AGBT) Update

Posted April 5th, 2018 by Be The Match and filed in Payer Policy
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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 transplant provider and health insurance communities.  The group is co-chaired by Dr. Nandita Khera, Medical Oncologist with Mayo Clinic and Dr. Jim Coates, Senior Medical Director of Aetna’s National Medical Excellence Program.

The 2018 group is currently comprised of commercial payers, transplant center administrators, and medical directors  who have an interest in improving access barriers to transplant for patients. Organizations such as Optum, University of North Carolina, Children’s Healthcare of Atlanta, Oregon Health, Interlink Health Services, Anthem, Kaiser Permanente, City of Hope, Sarah Cannon, HRSA, University of Miami, Dana Farber, Cigna, Memorial Sloan Kettering LifeTrac, Northwest Marrow Transplant Program and the Cleveland Clinic are represented this year and we are very fortunate to have them advising our work.

Below is a sneak peek into some of the priorities and projects that emerged during the meeting:

Care Coordination Work Group Update:  The care coordination work group is co-chaired by Dr. Khera and Pat Martin, Anthem’s Specialty Network Director.  This group is charged with identifying challenges and opportunities to improve the coordination of care across the transplant continuum.  The group gave an update on a toolkit being launched that will provide guidance and resources for patients, providers, payers and other transplant center staff as they journey together across the continuum of care for transplant.  Starting with diagnosis and ending with survivorship, the toolkit addresses what typically becomes missed opportunities to educate patients about key aspects of the transplant process.

Timely Referral Work Group Update:  The timely referral work group is currently chaired by Julie Walz, Healthcare Executive consultant formerly with MultiPlan and Dr. Bill Wood, Assistant Professor and Hematologist from UNC Health Care.  This group is charged with identifying challenges and opportunities to improve the timely referral of individuals to transplant.  The group discussed the need to influece hard to reach providers in the community who are not integrated into a health system with a transplant center.  There was agreement that payers may have a role to play in supporting NMDP’s efforts to improve targeted education and outreach to providers in order to improve timely access to transplant.

2018 Priority Highlight:  The advisory group’s priority for 2018 includes understanding the financial toxicity for patients. Financial toxicity describes the out of pocket costs associated with transplant evaluation, treatment and survivorship.  It includes costs payers typically define as co-pays, co-insurance, and deductibles among others.  There was agreement within the group that NMDP is well-positioned to partner with transplant centers and payers to implement a policy and research agenda that will systematically remove financial barriers pre and post-transplant.

The advisory group will be meeting this spring and the care coordination toolkit posted online soon so stay tuned for more updates!

Upcoming Conference: Timely Referrals Presentation at OptumHealth Conference

Posted April 5th, 2018 by Be The Match and filed in Payer Policy
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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 title of her presentation is “The Impact of Timely Referrals for Blood/Marrow Transplantation on Patient Outcomes and Transplant Success.” Dr. Burns is also a member of the CIBMTR Executive Committee.  OptumHealth Education is a joint accredited provider to provide continuing education for the healthcare team. This conference agenda is varied to provide an in-depth exploration of emerging technologies and trends in oncology and transplantation. Past attendees have included medical directors, nurses, pharmacists, case managers and medical management staff from payer and employer organizations throughout the United States.

We will be exhibiting at this year’s conference so be sure to look for us if you are attending.  We will have a table full of resources including information about our patient support programs, sample patient education materials, reimbursement and billing guides, transplant fact sheets, caregiver support resources, and information about how to work with our own Public and Payer Policy team.  So meet us in Arizona to get the latest on the impact of timely referrals on transplant outcomes and to chat with our team about our work removing financial barriers to transplant.

Find the conference agenda and register here: https://www.optumhealtheducation.com/txpcourse2018/

April 2018 Conference Updates

Posted April 5th, 2018 by Be The Match and filed in Payer Policy
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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, former CMS Director and IHI President Don Berwick, and many others.  Our team sent several staff who obtained insights as to what the various stakeholders are implementing when it comes to the federal and state health policy, internal operational/policy changes, and payer trends and initiatives to provide value based care.  Below is a summary of key points or trends that will impact access to cellular therapies for your consideration:

  • Value Based Insurance Design (VBID) holds promise for payers to provide true value by eliminating out of pocket costs for high value services. For example, CVS removed co-pays on both generic and brand name drugs.  This helped drive utilization to high value care.
  • Kenneth Burdick, CEO of Wellcare Health Plans, Inc. stated that 80-90% of prior authorizations will be removed from the company’s processes resulting in a better experience for their members.
  • CMS actuaries said high deductible health plans have helped control costs, so employers will continue to expand their use now and into the future.
  • Kavita Patel, Brookings Institution fellow and Johns Hopkins internist, stated that many oncology providers do not know the cost of pharmaceutical drugs for their patients, yet medication adherence and thus outcomes are driven by affordability of drugs according to a recent study in JAMA.
  • Technology is critical in the transition to value-based care, and as the amount of data payers have on their customers increases, opportunities for sharing information with providers will allow for shift to value-based payment arrangements.
  • Drug pricing affordability is an issue and patients need to be included in these conversations and be allowed transparency in pricing and benefits.
  • Social determinants of health framework is here to stay and payers are expected to navigate patients to resources. The National Marrow Donor Program (NMDP)/Be The Match ® has a variety of support programs to help you provide access to transplant and remove social barriers for your members.

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

Posted April 3rd, 2018 by Be The Match and filed in News
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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, making your advocacy all the more important and urgent.

We have a new goal for the month of April. We need to add 10 new co-sponsors! To do this, we need your help. If you have already sent an email (thank you), but now it’s time to make a call. If you have used social media (thank you), well, now let’s send an email.

We make it easy to send an email, make a call or post on social media with our action form. Take a moment and try it out! 

Why is this legislation so important?
Medicare rates do not cover the total costs hospitals incur when providing a bone marrow or cord blood transplant. The financial losses incurred by transplant centers when treating Medicare patients threaten their ability to continue to provide these transplants. This problem does not exist for solid organ transplants because Medicare pays for the acquisition cost of the organs separately and at a rate based on the cost of acquiring the organs. The PACT Act would require Medicare to apply the same policy to cellular transplants as well.

Your Member of Congress could implement a solution first by co-sponsoring and then urging immediate passage of the PACT Act.

Thank you for your continued advocacy on this life-saving legislation.

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.

Volunteers advocate for Be The Match on Capitol Hill

Posted April 3rd, 2018 by Be The Match and filed in Donor Stories, Volunteer Stories
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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 worked to educate lawmakers about the need for increased funding to support the national registry of volunteer marrow donors.

Meeting with U.S. Senators and Representatives was new to Abby, and she says the experience was both exhilarating and eye-opening. “I’m always seeking new ways to be of service to the cause,” she says. “This was a new one that would further educate me about what Be the Match does to advocate for our future patients.”

Abby donated peripheral blood stem cells to a patient four years ago, which she says moved her deeply and motivated her to want to do more to support Be The Match. She joined the Be The Match Board of Directors a year after donating.

She reports that lawmakers were receptive to hearing about the mission of Be The Match. “Approaching politicians with our unique and unassailable critical care and life-saving mission meant hearing nothing but support,” she says.

Abby wants others who support Be The Match to not be shy about contacting their Congressional representatives, and notes that while in-person meetings may have the most impact, sending letters and e-mail messages, and making phone calls can all be effective, too.

Abby says that much of her conversations with legislators focused on urging them to co-sponsor and then act to pass HR 4215, which is legislation to ensure that future Medicare payment for cellular transplant reflects the true costs of treatment. Currently, Medicare rates do not cover the total costs hospitals incur when providing a bone marrow or cord blood transplant to Medicare-eligible patients.

Abby says that she plans to leverage her new connections with D.C. legislators to continue urging them for “more dollars to innovate and break down barriers preventing access to life-saving transplants.”

Be The Match has online information about how you can advocate for our live-saving mission, including ways you can urge your Congressional representatives to support HR 4215.

Access the Be The Match legislative advocacy web pages >

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

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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.

Reflective writing can help you and others

For Ted, a blood and marrow transplant (BMT) recipient, he decided to write about his transplant experience for personal reasons. “I had come to a point in my life where the memories of and lessons learned from my struggle began to fade. I did not want them to. Revisiting those days and subsequently writing about them seems to be the best way to “re-ground” myself,” says Ted.

But did you know what you write and create can also help future patients and caregivers? Wendy, a transplant recipient, blogged throughout her experience. She says, “To this day, I meet people who tell me how much my honesty through my journey helped them with what they were going through. I did it for me, but it helped others.”

Share your original work of written or visual art

The Be The Match® Patient Support Center invites all BMT recipients, caregivers and parent caregivers to submit an original work of written or visual art inspired by their transplant experience. This may include a story or poem in English or Spanish that is up to 1,000 words, a painting, drawing or photograph. Be The Match will publish a free print and online book of submissions near the end of 2018.

You can participate if you’re a:

  • Recipient of any type of BMT, including allogeneic (unrelated or related donor), autologous, haploidentical, stem cell, umbilical cord blood.
  • Caregiver or parent caregiver of someone who has had any type of BMT.

People younger than 18 years old must have parent or guardian permission.

Visit BeTheMatch.org/BMTJourneys to learn more and share your story.

Writing can stir up emotions

It’s not uncommon to feel sad or down when you reflect on and write about your experience. “I was hesitant to cast myself back into the darkest days of my life,” says Ted. But it can bring good feelings, too. Ted notes that he “also wanted to relive the hope, the joy, and the love” from that time as well. The Be The Match Patient Support Center staff can support you and help you cope with the feelings that may be stirred up as you reflect on your transplant journey.

Call: 1 (888) 999 – 6743

Email: patientinfo@nmdp.org

Visit: BeTheMatch.org/one-on-one

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

Posted March 6th, 2018 by Be The Match and filed in Donor Stories
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Jason, transplant recipient

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 relieved his symptoms.

Jason’s experience with chronic GVHD

Jason says that he had anticipated getting GVHD after his transplant, and that he also tried to be mentally prepared for it. “But about 2 months into it I found out how GVHD drains you, takes your spirit away in a sense,” he recalls. “It really can affect your recovery.”

A few months after his transplant in 2011, Jason started to experience GVHD of the stomach and intestines. And then a few months after that, he noticed a red patch on his arm that his doctor confirmed was caused by chronic GVHD.

“So I started on prednisone and it worked,” he says. “But every time I tapered off the prednisone, the rash would come back on my arm, but also other places, my back and legs.”

That’s when he started asking whether ECP would be a good treatment option for him.

What is ECP, and who should be treated with it?

ECP uses light to damage the blood cells that cause GVHD. Dr. Laura Connelly-Smith, a hematologist at the University of Washington School of Medicine, describes ECP as “a procedure where an apheresis machine separates and removes some of the patient’s white blood cells. The collected cells are exposed to treatment with a drug and then “activated” by ultraviolet-A light (UVA) before being given back to the patient. This procedure is responsible for directly and indirectly damaging some of the T-cells that are responsible for causing the signs and symptoms of GVHD.”

ECP also helps “train” the recipient’s new immune system to become more tolerant, notes Dr. Connelly-Smith. “Unlike most other treatments for GVHD, we don’t think ECP will suppress, or hold back, the immune system. So, there is no evidence of increased risk of infection.”

“For people with GVHD, ECP is used when the GVHD doesn’t get better with high doses of steroid therapy,” says Dr. Connelly-Smith, who uses ECP to treat transplant recipients. Another use for ECP, she notes, is when patients like Jason can’t lower their steroid dose because their GVHD flares up.

Dr. Connelly-Smith also notes that ECP may be expensive. She recommends that you check to see if ECP is covered by your health insurance before you and your doctor decide to do ECP treatment.

In Jason’s case, his ECP treatments were every other week, 2 times per week, and his insurance company paid for the treatment.

More time-consuming than taking a pill

Jason’s experience with ECP treatment was typical. Each ECP session at the clinic would take 3-4 hours, most of the time spent lying in bed, and sessions were 2 times a week every other week.

“I maybe felt tired a little bit afterwards,” he says. “But I was able to continue to do things during the day.” Jason was working at the time, and so he scheduled ECP sessions really early in the day or late in the evening, which allowed him to work either before or after the treatments.

Not only is each ECP session time-consuming, but sometimes with chronic GVHD results may not be seen for 3 to 6 months. And Dr. Connelly-Smith notes that ECP is not helpful for everyone.

ECP success rates depend on what body parts are affected by GVHD, as well as the severity of the GVHD, she notes. Acute GVHD of the skin may get better in up to 8 out of 10 people, or up to 80% of cases, she says. For GVHD that affects the liver, stomach and intestines, it may not work quite as well. In these cases, according to Dr. Connelly-Smith, up to 6 out of 10 people, or up to 60%, will get better.

Progress after months of ECP

In Jason’s case, his doctor would re-evaluate his progress with ECP every 1-3 months. When Jason could taper off his prednisone while getting ECP without having his chronic GVHD symptoms flare up, he knew he had made real progress.

“ECP was a big part of me getting through this,” he says. But Jason also says that for him, both prednisone and ECP had a role to play in his recovery.

“For many people, prednisone works, and should be a part of the 1-2 year goal for recovery,” he says, while noting that ECP can be a huge part of a person’s recovery, too. “But ECP is a commitment,” he says. “If you’re committed to it, ECP may improve your quality of life.”

Questions to ask your doctor

It’s important to learn about your GVHD treatment options and ask your doctor questions. If you are considering ECP therapy, here are some questions you may want to ask:

  • Is ECP an option for me? Why or why not?
  • If I get ECP, when will we know if it’s working for me?
  • How much experience do you have using ECP to treat patients?
  • What are my options if ECP doesn’t work for me?

For more information about ECP, view our new fact sheet , developed jointly by Be The Match and the Chronic GVHD Consortium.

You can also contact the Be The Match Patient Support Center. Our BMT Patient Navigators can help you and your family get information and access resources and support. All of our programs and resources are free.

CALL: 1 (888) 999-6743

Monday through Friday, 8:00 a.m. – 5:00 p.m. Central Time

EMAIL: patientinfo@nmdp.org