Ed Plass and his impact with Be The Match

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In December of 2011, at the age of 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,” 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.” Many of Ed’s experiences with transplant, recovery, and advocacy has 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, 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 survivor can give. His wife Kate has also spoken at these events from a caregiver’s 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 over 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,” said Ed.

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.

 

Tips for traveling well after transplant

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No matter what the length of your trip ─ a short road trip or a global adventure ─ the key to traveling well after transplant is careful preparation, including having plans in place to access medical care should you need it.

Managing your special medical needs

Chris, transplant recipient

Tell your transplant doctor or primary care doctor about your travel plans. It’s a good idea to talk to your doctor before you schedule your trip to make sure they think you’re healthy enough to travel.

Experts also recommend that you take a letter from your doctor and a list of your current medicines with you.

“I always travel with a letter from my doctor that explains my health history, my condition, the list of medicines I’m on and my most recent blood test results,” says Chris, who began to travel again about 2 years after her transplant.

If you’re traveling to a different country, have the letter and list of medicines translated into the language of the country you’ll be visiting.

It’s also a good idea to carry emergency contact numbers with you, along with an after-hours phone number for your medical team. If you wear a medical alert bracelet, be sure that information is up-to-date. And don’t forget to bring your insurance information with you.

Help your immune system do its job

Even if you are years out from your transplant, your immune system may not be at full strength. Ask your doctor what precautions you should take if you’re flying, staying in a hotel room, or visiting a beach.

The first time Chris took a long flight, she wore a mask and gloves as a precaution. And when she arrives in a hotel room, Chris also wipes down all of the hard surfaces ─ like faucets, sinks, toilet seats, countertops and desks ─ with disposable sanitary wipes.

Chris says that when she travels with a tour group, she contacts them ahead of time. “I’ll explain that my immune system is weak and that there are certain restrictions I have, especially with food,” she explains. “They’re really good about making sure that everything is okay for me to eat.”

Medicines and medical emergencies

Make sure you have enough medicine with you to last the whole time you’ll be away. Take all medicines with you in their original containers, and if you’re flying, pack your medicines in your carry-on bag.

Traveling on a cruise ship is not recommended because medical services onboard can be very limited. And even the medical services available when the ship docks at a port may not be enough to meet your unique medical needs.

Also, consider buying 2 types of travel insurance:

  1. Trip cancellation insurance. Because complications can develop even years after a transplant, it’s wise to buy trip cancellation insurance in case an unforeseen medical issue forces you to cancel your trip.
  2. Supplemental medical insurance. This can help in case you need care outside of your home country. And even if your trip doesn’t cross a border, medical care outside of your health insurance company’s designated network is expensive.

Do some research and find out where the nearest hospital or transplant center is at your destination, in case of an emergency. Mike, another transplant recipient and frequent traveler, needed to go to the hospital while he was on a trip to Florida. His pre-trip preparation helped him quickly get the medical help he needed.

Because Mike was going to be away from home and his transplant doctor for several months, his doctor connected him with another transplant doctor in Florida. “He gave him all of my files and asked him to be my doctor if needed,” Mike says. “It was a good thing we had done that because I had some severe respiratory issues and needed treatment.”

Take it slow

Although you may be tempted to let your guard down and “just have fun” while you’re away from home, continue to follow your doctor’s advice. Take your medicines on schedule, and eat and drink according to your doctor’s recommendations.

Also be sure to protect yourself from the sun and bug bites. If your immune system is weak, avoid dirty and crowded locations as well as lakes, pools and hot tubs. If you’re headed to a beach location, wearing shoes may help protect your feet from cuts or scrapes when you walk along the shoreline.

Ask a traveling companion to support you in making good choices so you can have fun without taking unnecessary risks with your health.

A pre-travel checklist

When you’re packing for your trip, make sure you have:

  • A summary of your medical condition and treatment
  • Your vaccination records
  • Enough of your medicines to last your whole trip
  • Copies of your prescriptions
  • Your insurance information/card
  • Emergency contact information

Questions to ask your doctor

Before you make any travel plans, ask your doctor:

  • Am I healthy enough to travel in this country? In another country?
  • What specific precautions should I take because of my stage of recovery?
  • How do I reach my transplant team while I’m traveling?
  • What clinical documents should I take with me?

For more information:

Summer Safety: Take Steps to Take Care of Yourself

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With all you’ve been through, or are going through, it’s important to enjoy the simple pleasures of life after transplant. The warmth of the sun, the fresh summertime air, an outdoor barbeque with family and friends.

By taking a few special precautions, you can enjoy the summertime and protect your health. Read on to learn about ways to stay healthy this summer.

Ines, transplant recipient

Reducing your exposure to UV rays

The strong summertime sun can damage anyone’s skin. But as a transplant recipient, a sunburn is a much bigger deal for you than it is to others. That’s because sunlight can trigger graft-versus-host disease (GVHD), even years after transplant.

To lower your risk of GVHD, you’ll need to avoid the sun as much as possible. But that doesn’t mean staying indoors all the time. Just following these common sense steps:

  • Wear a hat, sunglasses, long sleeves and pants when you go out
  • Apply sun protection factor (SPF) 50 or higher sunscreen on any exposed skin before heading out
  • Wear sun-protective clothing (Note: Not all clothing gives you the same protection. Look for clothing that has a high Ultraviolet Protection Factor (UPF). Learn more.)

“Avoiding sun exposure should be life-long,” says Dr. Linda Burns, Vice President and Medical Director, Health Services Research at the National Marrow Donor Program®/Be The Match®. “We know, in addition to burning the skin, that sun exposure increases the risk of certain types of skin cancer.”

And don’t forget that even on a cool, overcast day the sun is just as harmful as on a hot, bright day.

Avoiding food-borne illnesses

Foodborne illnesses increase in the summer months because bacteria can multiply faster at warmer, more humid temperatures. Also, safe food handling is more difficult when food is prepared outside, as it often is at a summertime picnic or backyard party.

Be The Match’s JJ Barten, a Registered Dietitian, offers these tips to help decrease your risk of getting a foodborne illness:

  • On hot summer days above 90° F, prepared foods should not be left out for longer than 1 hour. Getting foods back into the refrigerator or freezer within 2 hours is recommended when the temperature is under 90° F.
  • When you’re getting the grill ready to use, make sure raw meats stay below 40° F until they are ready to be cooked.
  • Use a meat thermometer to make sure that beef, pork and fish are cooked to 145° F, ground meats to 160° F, and chicken and turkey to 165° F.
  • Avoid cross contamination when packing a cooler by using different containers to keep raw meats, poultry and fish separate from all other foods.

JJ says that careful planning is a good way to stay safe. For example:

  • Be one of the first people to eat. This helps make sure the food is at a safe temperature and there is less risk of cross contamination.
  • Bring your own food to events. Then you can be sure food was prepared safely.
  • Bring an alcohol-based hand sanitizer with you if you’re not sure there will be a place to wash your hands with soap and water before eating.

And finally, JJ suggests that if there is any question on whether a food item or a beverage is safe, throw it out.

For more information about summertime food safety, visit FoodSafety.gov.

Other summertime hazards to avoid

There are other outdoor risks in the summer, too. Dust and dirt from building sites, fields, gardens, and lawns can increase your exposure to harmful molds.

“Regarding dust and dirt, it’s best to avoid it in the first place,” says Dr. Burns. “Stay away from construction sites and farm lands, and ask your doctors when it’s safe for you to mow grass or work in the garden or flower beds.”

Swimming in pools or lakes could also be risky, because these may be contaminated with harmful bacteria such as Cryptosporidium, and E. coli. Dr. Burns says it’s best to avoid swimming in pools or lakes until your doctors gives you the go-ahead.

Finally, Dr. Burns recommends taking simple, common sense precautions and being aware of your surroundings. “Carrying a broad-brimmed hat, ample sunscreen, a face mask, and water with you during your daily activities can help keep you prepared for the unexpected.”

Questions to ask your doctor:

  • When is it safe for me to work in the yard or garden? To go swimming?
  • Are there any special precautions I should take if I’m going to the beach, pool, farm or woods this summer?

Want to learn more about safe eating and good nutrition after transplant? Register now for the free Living Now telephone workshop on nutrition 1+ years after transplant.

Date: Wednesday, June 13, 2018

Time: 12:00 p.m. to 1:00 p.m. Central

To register:

Visit: BeTheMatch.org/patient-workshops

Email: patientinfo@nmdp.org

Call: 1(888) 999-6743

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.”