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.

 

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.

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

Survivorship Care Plans: What are they and why do I need one?

Posted March 6th, 2018 by Be The Match and filed in News
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Linda Burns, M.D., Be The Match Vice President and Medical Director, HealthServices Research

A Survivorship Care Plan is a complete record of your medical history, all the treatments given before, during and after transplant, and what follow-up care you need to stay healthy. They keep your recovery on track by helping you coordinate your health care between the different doctors, nurses, social workers, and others that you’ll see after your transplant.

“The usual time to provide a Survivorship Care Plan to a transplant recipient is at about 12 months after the transplant,” says Linda Burns, M.D., Be The Match Vice President and Medical Director, Health Services Research. Many of the transplant care needs are decreasing by then, she notes, and the focus begins to shift to helping you stay healthy in the years to come.

What should a Survivorship Care Plan include?

Your plan should say which person on your health care team is responsible for which part of your ongoing care, says Dr. Burns. A Survivorship Care Plan is your personal tool ─ tailored just for your specific needs ─ to help you keep track of all your health care information in one place. Dr. Burns notes that a good Survivorship Care Plan should include:

  • A summary of treatment
  • A detailed plan for ongoing care
  • Follow-up schedules
  • Lists of any tests you need
  • Recommendations for how to watch for any treatment-related issues

How to use your plan

It is important to share your Survivorship Care Plan with your primary care doctor as well as any other specialists involved in your after-transplant care. This will help everyone communicate with each other.

Take your Survivorship Care Plan with you to all your visits with doctors and nurses. Use it as a reminder to ask questions, take notes, keep track of test results, and write down the next steps. “Transplant recipients have told us that having a plan helps relieve their worry that something won’t get done that’s important to help them stay healthy,” says Dr. Burns.

A recent research study of more than 450 transplant recipients showed this to be true. In this study, half the recipients received a personalized care plan, and half didn’t. Everyone in the study was 1-5 years past their transplant, and those who had a personalized care plan reported significantly less stress related to their cancer treatment.

“We strongly feel that empowering patients with knowledge and information will facilitate their survivorship care,” says Navneet Majhail, M.D., M.S., leader of the research study and director of the Blood and Marrow Transplant Program at the Cleveland Clinic Taussig Cancer Center.

Share your plan

Caregivers are important members of each transplant recipient’s support team. Parent caregivers can use the Survivorship Care Plan to keep track of their child’s health care needs, which will change as their child grows up and becomes an adult.

Dr. Burns also encourages adult transplant recipients to share their plan with caregivers and family members. It’s important for them to know what steps are needed to help their loved one stay healthy. “Caregivers and family members can help you coordinate visits and tests, remind you of questions to ask your care team, and may even notice symptoms that you haven’t. So it’s best to keep your support team informed.”

If you don’t have a Survivorship Care Plan

Your doctor or care team should give you a plan when you finish your transplant. If you’ve finished treatment but don’t have a Survivorship Care Plan, ask your transplant doctor or care team for one. Be sure to ask your doctor about anything in your Survivorship Care Plan that you don’t understand.

And if your transplant was several years ago, your care plan may need updating. That’s because transplant doctors know more than they did in the past about caring for transplant recipients, explains Dr. Burns. Plus, she notes, medical guidelines for follow-up care have changed with time. “Take your care plan to your appointments and ask them to review and update it so it meets your current needs.”

How Be The Match can help

You can also use free after-transplant care guides from Be The Match® to help keep your recovery on track. The guidelines have information on the recommended tests and exams for your 6 month and yearly checkups after transplant.

The guidelines are available in a free mobile app, online or print. There’s a version for your health care team, too. Bring a copy of your care guide with you to your next BMT appointment.

Counting down the days to Super Bowl LIVE!

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Minnesota Super Bowl Host Committee Partnership 

Since June, Be The Match has partnered with the Minnesota Super Bowl Host Committee (MNSBHC), and we are thrilled to be working with this organization. This partnership is a great opportunity to celebrate our communities’ diversity while raising awareness of our life-saving mission.

Through our partnership with the MNSBHC, Be The Match is sponsoring the Business Connect program, the NFL’s supplier diversity program to develop and utilize Minnesota-based, minority-, women-, LGBT- and veteran-owned businesses.

Additionally, Be The Match is sponsoring Crew 52, the group of 10,000 volunteers who will be welcoming guests into our beautiful city of Minneapolis, during the Super Bowl LIVE event.

Super Bowl LIVE

Come visit Be The Match at Super Bowl Live! This epic 10-day fan festival will take place on Nicollet Mall in downtown Minneapolis from January 26th – February 4th. The event is free and open to the public and will feature live concerts, national broadcasts, food and fun. The theme, “Bold North,” will showcase Minnesota winter, celebrating humor, hospitality and the heroic spirit.

The Be The Match Activation Zone, will be located on Nicolette Ave., between 10th and 11th street. Fully enclosed and heated, the activation space will provide attendees the opportunity to experience what it means to literally save a life. Throughout the 10 days, Be The Match Interactive Zone, will feature special guests, games and giveaways! 

Don’t miss this once-in-a-lifetime opportunity to be part of the world-class fun and excitement!

When caring for a transplant patient, take care of yourself, too

Posted January 7th, 2018 by Be The Match and filed in News
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Justin, transplant recipient, with mom and caregiver, Kari

If you are a transplant recipient, please share this article with your caregivers.

Researchers know that transplant caregivers are affected physically, emotionally, socially and spiritually by the transplant process and recovery. But caregivers may be thinking about all they have to do, and not thinking of taking care of themselves. In this article, you’ll find tips to help cope with the many challenges that come with taking care of a loved one who is recovering from a transplant. Plus, Be The Match has many free resources, listed at the bottom of this article, that can help.

Coping with stress

The stress of recovery from transplant affects you, too. And if you become physically exhausted or emotionally overwhelmed, you won’t be able to provide the care you want to give your loved one in the months ahead.

People have different styles of coping with stress. Think about your coping techniques and how they are, or aren’t, helping you. You can do this on your own, but some caregivers find it helpful to get support from others, including professional counselors, to help them learn coping techniques that work best for them.

Here are a few things to remember to help you cope when you feel stressed:

  • It’s normal to have emotional ups and downs
  • Put first things first and let the little things go
  • It’s okay to take some time alone
  • There are people who can help
  • You do many things very well
  • Take a breath in and out

Coping with emotions

Caregiving can bring up a lot of different emotions. And some of them, like anger or guilt, might at first seem wrong, and cause a caregiver to feel ashamed. But it’s important for you to know that all of your emotions are normal and okay. It’s how you cope with them that matters.

Here are some common emotions that caregivers sometimes experience, and some tips on handling them:

  • Feeling sad is normal. But if it lasts for more than 2 weeks, and interferes with your daily life, tell your doctor. It could be depression.
  • If you’re angry, do some self-reflection to figure out why. Knowing the cause might help you think of ways to cope.
  • Transplant has brought about a big change in your life, and it’s okay to grieve the loss of the way things were before. Grief takes time and attention to work through, and professional counseling may help you through the process.
  • No matter how dedicated you are, you might feel guilty that you’re not able to do more. Or, you might even feel guilty if you focus on your own needs. Remember, nobody is perfect and you do many things well. Caring for yourself is as important as caring for your loved one.
  • You might feel alone if friends and family have stopped visiting, or if you think no one understands your situation. Sharing your feelings with someone you trust may help you feel less lonely.

You have your own path to recovery

Because you are focusing so much on your loved one, you might not notice your own stress.

It’s important for you to pay attention to your own health and well-being because severe or chronic stress can cause depression, problems with memory and concentration, tiredness, and other issues if left untreated.

One caregiver put it this way: “I wasn’t really interested in any of the things I used to do. I was so busy trying to make it through each day that I never noticed that I had changed. My doctor explained that I was depressed and overwhelmed ─ and he prescribed anti-depression medicine (which helped). Both my daughters said they were happy to hear me laugh again.”

Sometimes it can help to talk with someone who’s been where you are and gets it. The Be The Match Peer Connect program connects you with a trained volunteer who is also a transplant caregiver. These volunteers can answer your questions and share their own experiences. Visit the website to learn more and request a Peer Connect connection.

Getting help from others

Everyone needs support when they are going through a difficult time. It’s okay to ask for and accept help. Remember, you would want to help your family and friends if they were in your situation.

Reach out to family and friends and let them know that you still need their help once you’ve left the hospital and returned home. General requests such as “Could you watch the kids sometime?” likely won’t help. Instead, ask for something specific such as “Next week we have several appointments. Could you watch the kids next Friday afternoon from 2 to 4?”  If you don’t live close to family or friends, consider asking neighbors, faith community members or co-workers for support.

Also, keep a list of specific tasks you need help with, like:

  • Meals
  • Childcare
  • Transportation
  • Yard work
  • Housework
  • Grocery shopping

Post the list in your home where people can see it, but more important, share it with friends, family, coworkers, or any other potential source of support.  If you use social media or other online support forums, such as Caring Bridge, consider making requests for help there.

Support for caregivers at every step

Remember, you’re not alone. Help is available. Contact the BMT Patient Navigators through the Be The Match Patient Support Center. They can help you get reliable, easy-to-understand information from diagnosis through recovery. They can also help you access one-on-one support through our:

Call or email us to learn about the many other ways we can support you through confidential, one-on-one support from caring experts. We’ll listen and help you find answers. All of our programs and resources are free.

CALL: 1 (888) 999-6743 Monday through Friday, 8 a.m. – 5 p.m. Central Time

EMAIL: patientinfo@nmdp.org

LEARN MORE: BeTheMatch.org/patient

ORDER RESOURCE MATERIALS: BeTheMatch.org/request

Volunteer Spotlight: Marcia Diefendorff

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Marcia Diefendorff first decided to get involved with Be The Match® when a family friend was fighting for their life and needed a bone marrow transplant in order to survive. She reached out and asked how she could help after learning about the marrow donation process and the great need for more donors to join the Be The Match Registry®.

Marcia began volunteering at local events throughout the Peninsula and South Bay Area in California where she educated people about Be The Match, the need for new registry members, and the importance of saving lives. It quickly became clear how talented Marcia was at teaching and interacting with people, which is no coincidence as she had been a teacher for many years.

Not only did Marcia volunteer around the time of her friend’s transplant, but she continues to stay extremely involved. You can still find Marcia at events two to four times a month and even up to four to five times a week during the busy season! Her dedication and generosity has not gone un-noticed. Marcia now trains other volunteers about the registration process, runs her own events, and continues to make meaningful connections with everyone she encounters.

“She improves every event she attends and is one of the most genuinely kind people I know. When I’ve called to thank her she usually says that she appreciates the call, but doesn’t do it for the thanks you’s,” says Amber, friend and former Be The Match Community Engagement Representative.

Marcia has made a huge impact already and continues to by volunteering for Be The Match. She has added many new potential donors to the registry, which provides patients with more hope and a chance at finding their life-saving match. Marcia’s dedication and years of service has earned her the Daily Point of Light Award as well as the title, Volunteer Ambassador of Be The Match.

If you’re a proud Be The Match volunteer like Marcia, share your support on social media with one of our volunteer badges.

Meet Steven: marrow donor and Walk+Run volunteer

Posted October 24th, 2017 by Be The Match and filed in News
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Steven, Be The Match Volunteer and Marrow Donor

Steven loves 80’s music, playing softball and watching movies with his girlfriend, Minga. He has an American Bulldog named Axel Foley, and he’s worked in banking for 18 years and Parks & Rec. for 10. He lives in Charlotte, N.C. Steven shares how he became a marrow donor and why he volunteers with the Be The Match Walk+Run events.

 

Why did you join the Be The Match Registry?

I joined while I was donating blood to the Red Cross. Back then it took a vial of blood to join. I was already hooked up, so I said, “Sure, why not?” It sounded exciting.

 

What was it like to donate marrow?

It was years later when I got the call that I was a possible match for a patient. They asked me if I wanted to proceed with the donation process. I would not have been able to live with myself if I hadn’t decided to help. The donation process was a breeze. Everyone on the Be The Match staff was very helpful and very appreciative.

 

What did you know about your recipient?

All I knew was the recipient was male, we were the same age, and he lived overseas. Someone from Be The Match was with me during my donation so that my marrow could go immediately to the airport.

 

Why do you volunteer for Walk+Run?

I’m not a rich person, so I don’t have a lot of money to give. But what I do have is a little extra time to give. It doesn’t take much of your time to volunteer and help someone. Since the Be The Match staff was so nice during my donation, I decided to become a volunteer ambassador. And I get to work with great people, like Be The Match community engagement rep., Addie Sanders. With her help I have gotten to meet many new people and hopefully helped make a difference in their lives.

 

What do you say to encourage others to get involved?

I tell them that joining the registry is an easy way to be a hero.

 

Learn more about how you can get involved.