Superstar Advocate: Ann Berkey

Posted July 9th, 2018 by Be The Match and filed in News
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Advocate Spotlight: Ann Berkey

Ann Berkey’s professional connection to the National Marrow Donor Program (NMDP)/Be The Match began in 2010 when she joined the Board of Directors. But her personal connection began a few years earlier, when her husband died of leukemia in 2009 because he couldn’t find a matched unrelated donor through Be The Match for a transplant.

She has also been a very active stem cell courier since she retired in 2014, and views that role as another way to “Pay it Forward.”

 

Tell us a bit about yourself, why are you so passionate about National Donor Marrow Program/Be The Match? How did you get involved?

In 2001, my husband was diagnosed with non-Hodgkin lymphoma (NHL) as a result of his exposure to Agent Orange during the Vietnam War. Although chemotherapy followed by an autologous bone marrow transplant extended his life for 7 years, he had no match for an allogeneic bone marrow transplant. His NHL eventually developed into acute myeloid leukemia, which was too far advanced for a cord blood transplant.

I was determined to do something to make sure no one else had the devastating experience that our family had. So I applied to be on the Be The Match Board of Directors, which I joined in October 2010.

I spent 45 years in government relations and policy, both within the federal government in Washington, D.C., and with two major corporations, mostly in health care and public policy. So learned and used my advocacy skills on both sides, which helps me in my role on the board of directors.

 

Advocacy and policy is a unique way to volunteer, what made you decide to take action?

Adequate reimbursement is a critical issue facing NMDP’s network and, in particular, the Medicare patients who need life-saving bone marrow transplants. As the widow of a Vietnam veteran, I also know that an appallingly large number of other Vietnam veterans, now covered by Medicare, are battling blood cancers as a result of their service in that war.

Medicare needs to ensure payment equity between those patients who receive solid organ transplants and those who receive “liquid” or bone marrow/stem cell transplants. A payment change will address financial issues currently encountered by hospitals serving Medicare beneficiaries.

Given my knowledge and experience in advocacy and policy, this effort afforded me a way to put both to use on behalf of NMDP/Be The Match.

 

You met with your lawmakers before your trip to Washington, D.C., so what advice would you give to someone who hasn’t worked with their lawmaker before?

Know the issue and the arguments on both sides. Provide the staff with no more than 3 concise reasons why they should take action on your issue. Be polite; make eye contact, leave them with a one-page summary sheet on the issue and send a short follow up note of thanks for their time and interest.

In many cases, you are meeting with young staff members who are inundated with issues and may not understand or appreciate the significance of your request. Give them examples of situations they can relate to. Be familiar enough with the congressional members, their interests and background to find common ground.

 

Do you have any advice for other advocates?

Despite the constant rhetoric about partisan conflict in Congress, it is always reassuring to see that many congressional offices do, in fact, work across the aisle with leadership or members from the other political party. The issues that NMDP/Be The Match champions are not divisive or political; they affect the lives of people these members might know!

Finally, remember that all politics is local. If you can give congressional staff specifics on how the issue affects people and organizations in their districts/states, you will provide them with more ammunition and incentive to take action. And above all, have fun! Talking to elected officials and their staff is part of our democratic right and privilege and you can have an impact on how they assess the issue and take action.

Why we launched @BTMPublicPolicy

Posted July 9th, 2018 by Be The Match and filed in News
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Phone2Action and Quorm have noted that 100% of Members of Congress are on Twitter and Facebook and most of those Members manage their Twitter account personally. They all have profiles on these platforms because they know that their constituents do too. Lawmakers have staff working for them to make sure they’re filled in on various issues, but they’re stretched thin when it comes to taking action on very specific policies. This is where civic engagement plays such an important role. If there are issues your organization cares about, using social media is one of the most straightforward ways for you to inform your legislators about issues that may not always be on their radar.

Rep. Joaquin Castro (D-TX) has said, “When there’s a big vote, and I want to know what my constituents are thinking … I ask my staff for an assessment of who’s called in for it and who’s called in against it—and then I’ll usually check social media myself.”

The number of emails into Members of Congress has increased exponentially, and while email is still a useful tool if you have the time to personalize your message, Twitter allows you to stay up-to-date with the latest on our health policy efforts as well as share your thoughts with your Members of Congress.

Even if you’re not on Twitter yet, take a moment to create an account and follow us. Take your advocacy to a new level and tweet!

Ask your Members of Congress to Protect Access to Bone Marrow and Cord Blood Transplants

Posted July 9th, 2018 by Be The Match and filed in Payer Policy
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As of today, there are 22 co-sponsors of HR 4215, the Protect Access to Cellular Transplant (PACT) Act of 2017.  We need your help to increase those numbers so that the House and Senate leadership take notice and try to pass the bill this summer. This legislation would not cost the federal government more money, but would require the Medicare program to pay transplant centers the cost of acquiring bone marrow, peripheral blood stem cells, and cord blood. Current Medicare rates leave hospitals with tens of thousands of dollars of costs that are not paid for by the program. Hospitals cannot shoulder this burden and access to transplants is at risk.  The policy in HR 4215 is one on which Medicare already relies for solid organs; it should apply the same policy to cellular transplants.

It is more important than ever that the Congress acts.  The Centers for Medicare & Medicaid Services (CMS), which operates the Medicare program, just closed the comment period on a new hospital payment rule at the end of June.  Although CMS received several hundred comments supporting a policy change, it is highly unlikely the agency will solve the problem as part of its rulemaking process.  For any change to take place, we need the Congress to act quickly before the new rates take effect October 1.

You can help by asking your Member of Congress to co-sponsor HR 4215 and support its immediate passage.  Act now to let your voice be heard.

Ed Plass and his impact with Be The Match

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In December of 2011, at age 68, Ed underwent an unrelated cord blood transplant to treat acute myelogenous leukemia, a life-threatening blood cancer.  Transplant is a rigorous treatment that requires a lengthy hospital stay and months to years of recovery. As a survivor of this intensely difficult treatment, he has dedicated much of his life to helping others going through the same process.

Ed’s wife Kate was his primary caregiver and a huge part of his transplant and recovery. She has stood by his side throughout this journey, and has also dedicated much of her time to advocating for Be The Match® with Ed. “Our oldest grandchild was 6 years old and the youngest was just 9 months when I had my transplant,” says 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.” Many of Ed’s experiences with transplant, recovery, and advocacy have been a family effort.

Ed is part of the Be The Match peer-to-peer counseling program for transplant patients, helps edit educational and support material, and was on the Leadership Council for several years, helping with legislative advocacy, donor recruitment and tabling events. He speaks to other patients who are anticipating transplant about his own experience and helps ease their fears, answer their questions and provide the kind of encouragement that only a transplant recipient can give. Kate has also spoken at these events from a caregiver perspective. He meets with social workers and other staff members to ensure that they know how best to support patients going through the same treatment that he did.

It is difficult to explain the impact that Ed makes on the patients who look to him for support, except to say that in this volunteer role he uses himself and his experience with transplant to connect with people who desperately need support.

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 more than 400 hours with Be The Match, connecting with patients, transplant centers and legislators. He and his wife have been very generous with financial gifts to Be The Match as well, as they understand that supporting patient assistance, recruitment and research is so important.  “After my transplant, I’m more aware of the issues which people [like me] can face, and I’m trying to give back,” Ed says.

We need more people to make an impact like Ed, and support patients like him. You could make an impact by signing up for a monthly gift. A reliable monthly gift will help more patients receive marrow transplants, expand the Be The Match Registry ®, and provide financial resources to patients and families in need Join us in our life-saving mission and give a monthly gift today.

My Sickle Cell Warrior Story: Memories of living with sickle cell disease and a life-changing decision

Posted June 19th, 2018 by Be The Match and filed in Patient Stories
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I have lived sickle cell free for nine years.

When I think about my life with sickle cell (SC), I remember my first day of kindergarten–closing my eyes to check if I was feeling pain anywhere in my body. I did not. I was feeling completely normal. That was the last time I would have that feeling for a long time.

My second memory was a nurse giving me a shot, and being surprised I didn’t cry or even flinch.

I told her there was no point in crying over the things you cannot change. I was resigned to living with pain from SC for the rest of my life.

In high school, every morning started with turning off the alarm, rolling over and taking a bunch of pills: hydroxyurea, penicillin and oxycodone. I even took the painkillers to school, to deal with the pain.

The pain was like slamming your finger in a door: the initial sharp pain, followed by a dull ache. The dull ache was my daily life. The sharp pain was a pain crisis.

When I was 16, I remember sitting down to dinner with my family. My dad said, “Your doctor told me about a doctor in Pittsburgh who is curing people with sickle cell disease. I want you to have a transplant.”

I didn’t know what a “transplant” was. I was looking forward to graduation, and applying to colleges. I had a life. I didn’t want to interrupt my plans for a “transplant.”

Then one day I had a pain crisis that landed me in the hospital. My doctors told me I had to be on blood thinners for the rest of my life. Then they couldn’t find a vein. I thought about a life in and out of hospitals, all the needles, all pills, all the pain.

That’s when I began to seriously consider a bone marrow transplant.

When I arrived at the transplant center to meet my doctor and the rest of the team, I thought they’d tell me how great transplant was and how fabulous I would feel afterwards. But they kept talking about what it involved, chemotherapy, isolation, and potential side effects. It sounded horrible. But they wanted me to understand what to expect. I just wanted to feel better. All I cared about was, can you fix my sickle cell and can you reverse the damage that it has done already?

Fortunately for me, my sister was a perfect match for me.  I went ahead and had the transplant. It was difficult, but the hardest part came afterward. I was immune-compromised on my 18th birthday. I had a huge chocolate cake I couldn’t eat. I had gifts I didn’t care about. I was worried about losing my insurance coverage because I turned 18. My mom had lost her job in Chicago because she spent so much time caring for me. Financially, it was very challenging, but our social workers helped us find grants and resources and our family helped fundraise. On top of all that, I was missing college interviews.

It took about a year after my transplant to accept that I no longer had SCD. It had been part of my life for so long, I had to figure out who I was without the disease. I had to unlearn old habits. Recovery was gradual, but eventually, my siblings were able to stop being careful around me, and my parents could breathe a sigh of relief.

My one regret is that I did not freeze my eggs before treatment, but having children was not my priority at 16.

Learning to adapt to life without sickle cell has been difficult, but life continues to get better. Sharing my story helps. I’m grateful for the experience and thankful to be alive.

 

 

 

 

 

Superstar Advocate: Jeff Haertling

Posted June 4th, 2018 by Be The Match and filed in News
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Meet Jeff. As many of our registry members do, Jeff joined the registry in hopes of helping a friend. Although not a match for his friend, Jeff was called in 2009 as a match for a 16-year-old girl named Kim, who was fighting acute lymphoblastic leukemia (ALL). Today, Kim is a vibrant young woman who recently graduated from college and is living her life to the fullest. Together, they’ve fought to protect access to cellular therapies for the hundreds of other patients who need it.

Jeff and Kim were part of the 2013 Legislative Day. At the time, the federal government was debating “sequestration,” which could have meant big budget cuts for the C.W. Bill Young Cell Transplantation Program (Program), operated by Be The Matched. The goal was to protect funding to the Program.

Kim and Jeff’s participation was crucial because it put real people impacted by the Program in front of Members of Congress to help them see tangible proof of this Program’s success. “We like to think that we made a pretty good team,” said Jeff. “As Kim would tell Congressional members and their staff, ‘I literally wouldn’t be standing here today without his stem cells.’ Then I’d follow-up with. ‘And I wouldn’t be here today had it not been for the recruiting efforts of Be The Match.”

It’s now 2018, and Jeff is still as passionate, pointing out, “Advocacy for the cause today is more important than ever because of the evolving nature of stem cell transplantion. New therapies and ongoing research have allowed these procedures to help so many more people, especially older folks who are diagnosed with a type of blood cancer or disorder. But the coverage for this same population hasn’t kept up with the advancements in medicine.” Approximately 1,200 medicare patients annually need a cord blood or bone marrow transplant. “We need actionable attention to Medicare coverage for transplants now.”

Jeff has the best advice for advocates, “Use your own voice. Tell your story and engage on a personal level. It’s the real-world unscripted outreach that has the most impact.”

You too could be a super advocate like Jeff. To learn how you can become a Be The Match Advocate, visit our website or reach out to us at legislation@nmdp.org.

Urge the Medicare Program to Protect Access to Bone Marrow and Cord Blood Transplants: Comment today!

Posted June 4th, 2018 by Be The Match and filed in News
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The Centers for Medicare & Medicaid Services (CMS), which operates the Medicare program, is taking comments on the regulation that sets payment rates for hospitals through June 25.  CMS has not addressed the barrier its outdated payment policy creates for Medicare beneficiaries trying to access bone marrow and cord blood transplants in this rule.  They need to hear from you that it is time to act.

Two Paths, One Goal

NMDP’s Public & Payer Policy team is committed to securing a solution to this patient access barrier. We have had many discussions with CMS around fixing this issue, which would mirror the way solid organ reimbursement is structured.  At the same time, four Members of Congress have introduced a bill, HR 4215 “Protect Access to Cellular Transplant (PACT) Act” that currently has 22 co-sponsors and strong support from our grassroots advocates.

We need to continue our advocacy efforts at CMS and with the U.S. Congress around HR 4215 because the lack of attention to this issue will threaten Medicare patient access to transplant. Medicare accepts public comments on all rules; anyone can comment, and we hope you will take a moment to share your thoughts.

CMS needs to hear from you! Please help us by sending a comment letter asking CMS to pay for the acquisition costs of bone marrow and cord blood cells the same way it does for solid organs. Go to our website and tell CMS why it is important they fix this problem today.

We aren’t done yet. Fiscal Year 2018 Increased Funding, but Fiscal Year 2019 Funding Only Beginning

Posted April 26th, 2018 by Be The Match and filed in News
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Thank you again for contacting your Members of Congress as they were finalizing the current 2018 appropriations bills.  Congress increased funding for the C.W. Bill Young Cell Transplantation Program (which NMDP/Be The Match is entrusted to operate) by $5 million dollars.

 

Now, we need to do it again. The Congress is turning to the next fiscal year, which begins October 1, 2018.  We appreciate everyone who has already reached out their Members of Congress to support the FY 2019 funding for the Program and NCBI.  The Congress is now reviewing the requests and will begin developing the appropriations bills in the coming months, and we want to keep our amazing work in the spotlight. Even with the increased funding, we are still not at the recommended levels for our program of work.

 

To stay up-to-date on the latest news, Text MATCH to 52886.

CMS Issues Proposed Hospital Payment Rule without Fixing Bone Marrow/Cord Blood Rates

Posted April 26th, 2018 by Be The Match and filed in News
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The Centers for Medicare & Medicaid Services (CMS), which operates the Medicare program, has released the “Hospital Inpatient Prospective Payment System (IPPS)” Proposed Rule for Fiscal Year 2019.

This rule, when finalized, will set the rates for bone marrow and cord blood transplants. The rule, as it stands, remains silent on the long-overdue fix to the reimbursement method used to calculate how much hospitals are reimbursed for providing bone marrow and cord blood transplants. The NMDP has worked extensively with CMS to address inadequate reimbursement for stem cell transplant, and in particular, reimbursement for donor search and cell acquisition costs.

The financial losses incurred by transplant centers to treat the approximately 1,200 Medicare patients each year threatens their viability and may result in serious access issues for Medicare patients. Hospitals lose thousands of dollars on every Medicare patient they treat. Patients who do not have access to transplant will face expensive, likely futile alternative treatment options. In most cases, transplant is the best option for survival.

We are asking for the same fix that is part of the “Protect Access to Cellular Transplant (PACT) Act” (H.R. 4215). This legislation would require CMS to pay for the acquisition costs of bone marrow and cord blood using the same separate payment method that is used for solid organs. If CMS does not act in this rulemaking, the Congress will have to pass the legislation to force the fix.

We need your help. CMS is seeking comments on the proposed rule and wants to hear from people like you. Please help us by sending a comment letter asking CMS to pay for the acquisition costs of bone marrow and cord blood cells the same way it does for solid organs.

Comment Now

 

Advocate Spotlight: Gary Goldstein

Posted April 26th, 2018 by Be The Match and filed in News
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Advocate Spotlight: Gary Goldstein

Gary Goldstein is currently the Business Manager for the adult BMT program at Stanford Health Care, an NMDP Network transplant center. He is also the current Chair of the NMDP’s Council Advisory Group, and he has served on the NMDP/Be The Match Board of Directors.

But his passion for promoting the mission of Be The Match goes beyond serving on committees. And that passion started more than two decades ago. Here, in Gary’s own words, are why he’s driven to promote Be The Match and what he’s been doing lately to promote the organization’s life-saving mission.

 

Tell us a bit about yourself. Why are you so passionate about the National Donor Marrow Program/Be The Match? How did you get involved?

Gary: I began working for the Stanford Health Care BMT Program in 1995. Shortly after that I joined the registry, was matched with a patient, and donated bone marrow. Although my cells engrafted in the recipient, his disease returned and he passed away.

I want to do all I can to ensure that everyone who needs a match finds one, and that people who do undergo hematopoietic cell transplantation survive to live full and happy lives.

 

You went to Washington, D.C., to meet with lawmakers. What was that like? Scary? Educational? Fun?

Washington has recently been referred to as a “swamp,” but I found that the people I met with are working hard to try and get things accomplished. They listened to our input, asked good questions, and were very engaged. It was exciting to be there, but a bit overwhelming with so many buildings, tunnels, hallways, and offices. It’s very easy to get lost!

 

Advocacy and policy is a unique way to volunteer. What made you decide to take action?

I’m very proud of the work Be The Match does, as well as the work of transplant programs here in the U.S.A. Having a chance to have my voice heard was very empowering, and I always think of patients and their families that need our help.

 

You met with your lawmakers before your trip to D.C. What advice would you give to someone who hasn’t worked with their lawmaker before?

Lawmakers and their staff have very busy schedules, so make sure your message is clear, focused, and on point.

 

You asked your health system to get involved and have helped co-sponsors to sign on to HR 4215, the PACT Act. How did that come about?

As the Stanford BMT Business Manager, I see how Medicare pays hospitals for organ procurement such as kidney acquisition, but doesn’t pay for acquisition of marrow, blood stem cells, or cord blood. This isn’t sustainable, and I want to ensure that Medicare patients have access to all the types of treatment that those with commercial insurance can get. The more voices, the stronger the message.

 

Any advice to other advocates?

Make sure to show how the legislation or changes you’re advocating will help real people. That was easy to do for BMT and Be The Match, because the need is so powerful and compelling.

Learn more about how you can support our mission to fund cellular therapies.