Support for siblings after your child’s blood or marrow transplant

Posted September 5th, 2018 by Be The Match and filed in News
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Transplant and recovery is an emotional and challenging time for families. Each family member will cope differently as your child recovers. Your child’s siblings may experience stress in different ways, too. Here are some of the signs of stress to watch for in your other children and ways to help them cope in healthy ways:

 Signs of stress for children may include:

  • Changes in eating habits
  • Trouble sleeping
  • Drop in school performance
  • Headaches
  • Worry
  • Irritable

If you notice these signs in your child, talk to your child’s health care team. They can share resources to help you and your family.

Some things you can do to help your children cope with a sibling’s transplant and recovery include:

1. Keep a routine

Children find comfort in routines. Whenever possible, help your children continue their normal activities.

  • Prioritize family time. Make time to check-in as a family each day.
  • Keep a few family activities, such as breakfast or dinner, at the same time every day
  • Go over your family’s calendar together every few days or so, and be sure everyone knows what to expect and when.
  • Arrange for your children to participate in school activities and spend time with friends on a routine basis. For example, if your focus needs to be on your child’s transplant recovery, ask other family members and friends for help so your other children can continue their scheduled activities.

Tools like ShareTheCare.org and LotsaHelpingHands.com can help you organize help from family and friends.

2. Help your children express their feelings

It’s normal for children to have many different feelings when their brother or sister is sick and recovering from transplant. Sometimes they may feel isolated and find it hard to talk about their feelings. It’s common for siblings of children undergoing transplant to feel:

  • Lonely
  • Sad
  • Anxious
  • Jealous
  • Guilty
  • Afraid

You can help your children identify and express their feelings, and manage their emotions in a healthy way. Depending upon their age and developmental stage, here are some ways you can help your children identify their feelings and talk about them:

  • Use dolls or action figures to have your children act out their feelings.
  • Listen and provide reassurance.
  • Have your children draw pictures of how they feel. Then, ask them to talk about what they drew.
  • Ask your children to finish sentences, like “I am worried about ___________.” or “You can help me feel better by ___________.”
  • Encourage your children to ask questions. Give as much information as they are able to understand.
  • Give your children a journal to write down their thoughts and experiences.
  • It’s okay to say, “This is new for me too,” and that you’ll work together to figure it out.
  • Talk openly and honestly about difficult topics.

Not all of the feelings your children will have will be negative. The transplant experience can lead to positive experiences for siblings, too.  Your children might become more sensitive to others’ feelings or have more coping skills

3. Show your children your support for them

You can support siblings by showing and telling them they are loved and you are there for them, too. Some ways to do this include:

  • Take time each day to talk about their day, activities and friends.
  • Celebrate their accomplishments.
  • Ask a family member or friend to spend quality time with your children when you can’t.
  • Encourage family and friends to include all of your children in their visits and well-wishes.
  • Tell each child the special things you love about them.

Your transplant center’s social worker or child-life specialist can also provide ideas and support.

Resources for you and your family

 

 

 

Follow up to “Why are there age limits for registry members?”

Posted August 23rd, 2018 by Be The Match and filed in Donor Stories
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Dr. Dennis ConferFrom Dr. Dennis Confer, Chief Medical Officer, National Marrow Donor Program

Our blog post in 2011 about age limits for Be The Match Registry prompted a lot of responses from registry members. Many of them were unhappy, in some instances, really unhappy, about the upper age limit. Be The Match Registry only accepts donors between the ages of 18 and 60. Registry members are automatically moved to inactive status on their 61st birthday. We’re happy that the post generated so much thoughtful and vigorous discussion. It shows the passion and commitment of donors toward helping patients. I will try to address some of the issues.

Transplant doctors prefer younger donors for their patients

In our previous post, we stated that one reason for the upper age limit is to provide the best treatment for patients. Doctors weigh many factors when selecting a donor for one of their patients; the age of the potential donors is one of them. Transplant doctors want younger donors. This preference is also data-driven; there are publications suggesting that patients with younger donors do better. See for example, http://bloodjournal.hematologylibrary.org/content/98/7/2043. Need to add Kollman BLOOD, 14 JANUARY 2016 x VOLUME 127, NUMBER 2.
Some of it is judgment. It is very clear that the bone marrow ages just like other organs; the cellularity of bone marrow declines with age. You can’t get as many cells out of an older donor as you can from a younger one, and higher cell dose improves the chances of success.

Additionally, there are little parts of each cell’s chromosomes, called telomeres, whose length reflects the residual ability of the cell to divide. Guess what? — the telomeres of bone marrow cells get shorter with aging. If you do bone marrow transplants serially in mice, the bone marrow poops out when the telomeres are gone. Can bone marrow from a 65-year-old donor last another 45 years or more in a 20-year-old recipient? We don’t know, but a lot of doctors are reluctant to do the experiment. Most would like to put young bone marrow in young patients, and older patients, too, for that matter. Finally, it is also true that diseases of the bone marrow, like myeloproliferative syndrome, myelosdysplastic disease and acute leukemia, are diseases of aging; their frequency begins to increase around age 45 and continues relentlessly throughout older age.

World Marrow Donor Association standards

The NMDP is one of 67 donor registries around the world that participate in the World Marrow Donor Association (WMDA, https://www.wmda.info), an organization that facilitates international donation and transplantation, and promotes the interests of donors. WMDA standards require donor registries to stipulate an upper age limit not to exceed 60 years. In fact, many other donor registries have set lower age limits for joining: age 55 in Germany, 50 in Canada, 40 in Australia and in the United Kingdom, 54 in Japan. Most of these registries consider members already on the file eligible to donate up to age 60. Maybe the NMDP could work around this standard if there was a compelling reason to do so, but the simple fact is — no registry in the world keeps donors past the age of 60.

Age is a factor in a person’s health

We know there are many people over age 60 who are in excellent health. There are also many who are not. I talked about aging bone marrow above, but other health problems also increase with age. The rate at which potential donors are found medically unable to donate is highest in NMDP’s older donors. This higher rate of medical deferral matters because it presents a risk to patients. When the selected donor turns out to be unable to donate, transplant may be delayed, which can jeopardize a patient’s likelihood of success. Medical deferral often happens late in the process, when the donor is being “worked-up” for donation, and it is a huge disappointment for everyone. This is another reason that doctors like younger donors.

Hitting the age limit

I myself turned 61 in March, 2011. I’m no longer on the registry and I am righteously indignant about it. I started exercising 3 years before and I had lost 20 pounds. I am in the best condition of my adult life. That nobody wanted me during the 20 years I was on the registry only further irritates me. But in reality, I would not be a good donor. There are more than 200 people with my HLA type on the registry and they are all younger than I am. So, there are other ways (in addition to doing my job) that I will be making a difference — and other ways you can, too. Contributing money or hosting a donor recruitment drive may not offer the same joy and satisfaction that the opportunity to donate marrow would, but these acts are crucial to saving more lives. I am also encouraging my sons to join the registry. They are young men and can be members for a very long time. And it’s about time they did something that makes sense!

 

Last updated: August 23, 2018

Spotlight on long-time Be The Match Volunteers

Posted August 9th, 2018 by Be The Match and filed in Volunteer Stories
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When Karen Lorentz’s three year old son Bob needed a live-saving bone marrow transplant, she became involved with Be The Match.  21 years later, Bob is cancer free and Karen and her community have found a way to give back to help support other families in need of similar live-saving treatments.

She and her neighbors have rallied behind Be The Match and its mission by becoming volunteer couriers.  Karen, her husband, and their friends John and LeAnn Savereide are all now volunteer couriers for Be The Match.  In 2017, Be The Match volunteers contributed over 164,000 hours dedicated to all aspects of our mission, saving nearly 6,100 lives including our 337 volunteer couriers that completed 2,268 product deliveries.

Be The Match offers many different volunteer opportunities, allowing those individuals to have a direct impact on patients with blood cancers and diseases. John’s advice is to “apply and hope you are selected. It has to be one of the most interesting and rewarding volunteer opportunities that exists.” John also says that the most rewarding aspect of volunteering with Be The Match is thinking about the patients receiving the product, and what it means for them and their families.

According to Karen’s neighbor LeAnn, who is also a volunteer courier, “The most rewarding aspect of this job is thinking about the people waiting for the product and what it means for them. Having loved ones who have received an unrelated match I know how important it is.” By confidentially delivering these life-saving stem cell treatments to patients in need, the volunteers feel a sense of responsibility, hope, and satisfaction.

When asked why she has continued her work as a volunteer with Be The Match, Karen says, “Well, quite simply, I am addicted to saving lives. I have had many volunteer jobs over the years and this one I find to be the most rewarding. Someone 21 years ago volunteered to save my little boy’s life and a courier delivered the lifesaving cells to us. It gives me great satisfaction to think I am now a courier and able to do this for a patient, and giving back something that was given to me.” Watch their video to hear more of their story and what it means to be a volunteer courier

Be The Match volunteers are needed across the nation and there is something for everyone.  Whether you want to help out at fundraisers, support our mission or work directly with patients and donors, you can help deliver hope for patients and families dealing with blood cancers and diseases.  If you are interested in learning more, visit https://www.bethematchvolunteer.org/

Super Star Advcocate: Caron Myers

Posted August 6th, 2018 by Be The Match and filed in News
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Back in 1983, Caron’s sweet, 5-year-old daughter Brandy was diagnosed with cancer. The previous year, doctors thought her illness was just juvenile rheumatoid arthritis. Months later, they found out how wrong they were. She was diagnosed with Stage 4 lymphoblastic lymphoma, a sister disease to leukemia. For the next three years, she was treated with a series of intensive chemotherapy. After a tough fight, she went into remission and was stable for about a year.

Just as the following March winds began to blow, so did a relapse of the disease. At that point, she relapsed with Stage 4 Acute Lymphocytic Leukemia (ALL), and doctors said her only hope would be blood stem cell transplant. The year was 1986.

There are two factors in Brandy and Caron’s story that played into the development of the C.W. Bill Young Transplantation Program and the start to NMDP/Be The Match. Brandy’s primary pediatric oncologist was Dr. Jerry Barbosa. But, a new doctor had joined forces with Brandy’s hospital – All Children’s Hospital in St. Petersburg, Florida. His name was Dr. Robert Goode, and he was helping develop a new bone marrow wing for the oncology unit. He was known to his fellow doctors as “the father of bone marrow transplantation.”

Caron’s father, on the other hand, was involved in politics, and her family had close relationships with many political figures. During Brandy’s fight, she met President Ronald Reagan, at the behest of Senator Paula Hawkins, then Vice President George H.W. Bush and Second Lady Barbara Bush. Her family also had a close relationship with Congressman C.W. Bill Young who would often visit the hospital and regularly check on Brandy’s condition.

Congressman Young wanted to help not only Caron and Brandy, but others dealing with the same kind of pain from life-threatening blood cancers and blood diseases. Caron asked Congressman Young, “With the advent of computers and blood banks, why can’t [the doctors] merge things together to create some sort of clearing house, so it would help everyone?” He went to work on finding a solution, which would ultimately result in the C.W. Bill Young Cell Transplantation Program operated by the National Marrow Donor Program/Be The Match.

Unfortunately, at the time, the registry was in the very early stages of development. Brandy’s only option was to receive an autologous blood stem cell transplant, meaning she would be her own donor. Brandy had to travel to the University of Minnesota where she received the transplant, which was her only chance at survival. Sadly, on Mother’s Day 1987, Brandy died.

Congressman Young was one of the first phone calls Caron received, as well as condolences from the Reagans, the Bush family and many other members of Congress who had supported the legislation. In the Congressman’s address to the House floor, he mentioned Brandy—she inspired legislation that helped others find a match on the program’s registry and helped cure life-threatening diseases like her own.

Caron continues to use Brandy’s story as an opportunity to persuade policymakers to help others. She has been fearless in her advocacy. As Caron says, “They put their pants on the same way you and I do. Many of them come from humble beginnings. Everyone has a story, and politicians are no different.”

Jason Carter Clinical Trials Program: One year of helping patients find clinical trials

Posted July 9th, 2018 by Be The Match and filed in News
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Every year, thousands of patients are diagnosed with blood cancers and other life-threatening diseases. For many patients, treatment through clinical trials provides hope and a potential cure.

But finding clinical trials can be challenging, so the NMDP/Be The Match partnered with the Jason Carter Clinical Trials Program (JCCTP) to help patients find and join clinical trials. At the heart of the JCCTP is a patient-friendly website, which is marking its one-year anniversary in July.

How the JCCTP website helps patients and their families

More than 250,000 clinical trials are listed on the U.S. government’s ClinicalTrials.gov website. However, these trial listings are very technical and patients have a hard time determining if they are eligible to join a particular trial. To make it easier on patients and their families, NMDP/Be The Match has found the most relevant clinical trials for patients with blood cancers and blood disorders and rewritten them to make them easier to understand. In the first year of the program, over 1,200 clinical trials have been added to the JCCTP website in a way that makes them much more accessible for everyone.

Financial assistance to help with travel to clinical trials

Last fall, The Drs. Jeffrey and Isabel Chell Clinical Trials Travel Grant was created in partnership with the JCCTP to provide financial help to qualified patients. The first travel grant was awarded in November and the patient received help paying the necessary travel costs for clinical trials, including:

  • Patient and companion air travel: booked by dedicated travel agents
  • Ground transportation: gas, parking and public/mass transit (bus/train/cab/etc.)
  • Accommodations: hotel, temporary housing and incidentals

Recognition for the JCCTP

In May, NMDP/Be The Match was presented with the Innovation Programs Award for the JCCTP at the 2018 Institute for Healthcare Advancement Health Literacy Conference. This award shows just how important it is to have a program that offers the much needed assistance to those that are seeking more information on how to find the right clinical trials.

Other features of the JCCTP

Even after using the search tool to find clinical trials that may be a good fit, patients and their families may have more questions.

As part of the JCCTP, NMDP/Be The Match has a full-time Clinical Trial Patient Education Specialist to provide free one-on-one support by phone and email to help patients and families find and join clinical trials.

Scott Kerwin, MN, RN, CCRC, CCRN, is the JCCTP Clinical Trial Patient Education Specialist, and he says that the most valuable help he provides is navigating the clinical trial system. “Because of my many years of working in hospitals as a bedside and clinical research nurse, I know how the system works,” he says. “I know how to contact the right people in the right roles.”

To contact Scott, call 1(888) 814-8610 or email clinicaltrials@jcctp.org.

About the Jason Carter Clinical Trials Program

The JCCTP is funded by the Carter family, in memory of their son and brother, Jason Carter, who lived with leukemia for more than 4 years, passing away in May 2016, at age 28. He participated in 2 clinical trials, which gave him more time with his family.

Returning to work after transplant: Tips for success

Posted July 9th, 2018 by Be The Match and filed in News, Patient Stories
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Doctors usually suggest transplant recipients wait at least 1 year before going back to work after transplant. That’s because it can take a year or more for your immune system to recover.

When, or if, you return to work after transplant should be up to you and your doctor. You may want to return to work as soon as possible because you want to regain a part of your life before transplant. Or, maybe you need the income from a job. Whatever the reason, we have tips on how to ease yourself back into the working world.

Dealing with an “employment gap”

Because you didn’t work during your transplant recovery, your résumé will show a length of time when you were not employed. This can be difficult to discuss during a job interview.

Remember, federal law prohibits your health history from being used against you when you return to work or look for a new job. And if you’re looking for a new job, companies can’t ask about your health history and you aren’t required to tell them about it unless you choose to do so.

Still, it can be a difficult decision. Karen, a transplant recipient, has struggled with what to say during interviews. Would her story of recovery show strength and how she had overcome so many obstacles?

Karen chose to fill the gap in her employment by highlighting her volunteer work ─ and in fact put that at the top of her résumé. “There are keywords that say ‘volunteer work’,” says Karen. “It’s what I’m doing, it’s where my skills are at, and it’s my experience.”

Preparing for physical and emotional demands in the workplace

It can be physically and emotionally difficult to return to work after an extended leave after transplant.

“Work is demanding and patients often worry about whether they will be able to respond to the pace and requirements,” says Katie Schoeppner, MSW, LICSW, and Supervisor of Be The Match® Counseling Services. “Many patients describe symptoms of ‘chemo-brain’ that can affect short-term memory or make it hard to organize thoughts.”

To help manage those issues, Katie recommends “coping ahead of time” by thinking of situations or aspects of work that may be difficult and prepare for them. “For instance, come up with a plan for setting reminders (post-it notes, a calendar, an alarm) if you’re concerned about managing a lot of demands,” she says.

For Herschel, a transplant recipient who returned to his previous job, it was important to take things slowly at first. “When you return to work, you need to take your time,” he says. “You don’t have to impress anyone. Give yourself permission to take it easy, and one day, you’ll begin to see that you’re accomplishing tasks in a very real and effective way.”

Katie also has suggestions on how to tactfully deal with co-workers who may ask a lot of unwanted questions about your disease and treatment. As part of a “coping ahead” strategy, Katie recommends that you think about the kinds of questions you may be asked about your time away. “Then, come up with an ‘elevator speech’ that you can use to move quickly through those conversations,” she says.

Benefits of returning to work

For many people, work not only provides financial stability, it also gives a sense of purpose, identity and belonging.

This was especially true for Karen. At her first job after her transplant, she says that it felt so good just to get up and shower and have a place to go. “It’s a first step,” she says. “If it takes baby steps, one day at a time, get out there as soon as you can before you get seized by paralysis.”

Work provides structure to our days, plus social interaction that plays a major role in a person’s self-esteem. “It speaks to identity,” says Karen.

When work seems out of reach

Even if you want to go back to work, it’s not always easy to find the right job for you. Karen, who’s seeking work after transplant now, says “before transplant, I had a sense of pride in my work. Now, people don’t see that side of me or that my skin is covered with GVHD. They don’t know my story.”

If you’re struggling to find work after BMT, Katie recommends “seeking out volunteer and networking opportunities in their community.” They can be a great way to build up a résumé and open doors to possible employment.

Sometimes life after transplant can be an opportunity to consider a new type of work. Take stock of your relationships and values – think through what and who is most important to you now. Use that list to guide how you spend your time. “Then, consider doing some informational interviews with people in jobs that seem interesting to you,” says Katie.

For Karen, the experience of illness, treatment and recovery has changed her focus of what she wants to do. “I feel drawn to non-profit and service oriented jobs.”

Practical tips on going back to work

Our Living Now series of newsletters have additional tips on life after transplant. View or download Living Now, Issue 3 to find an article on going back to work or school on pages 6-8.

In addition, the Be The Match Patient Support Center can help you find resources and cope with job-seeking and work after transplant. Some resources include:

Coping with body image changes after transplant

Posted July 9th, 2018 by Be The Match and filed in News, Patient Stories
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There are many side effects of a blood or marrow transplant (BMT) that can impact your body image. These include hair loss, skin and muscle changes, and weight gain or loss. Some side effects, such as fatigue (feeling tired), aren’t visible, but can still affect your body image.

What is body image?

Your body image is how you see your body and how you feel about it. After transplant some people may see the changes in their body and feel embarrassed or self-conscious. Others may see the strength it took to get through treatment and feel proud of their body.

Worrying about body image can happen because of the changes to your body and because the changes remind you of the disease and treatment.

Watch for signs of body image concerns

If you don’t feel good about your body after transplant, you’re not alone. You may have body image concerns if you:

  • Are very unhappy with your physical appearance
  • Feel worried about physical changes in your body
  • Avoid social situations due to your appearance
  • Are stressed about or avoid romantic relationships due to changes in your body

If you or your loved one has any of these signs, help is available and there are ways to cope.

Talk about your body image with a trusted person

While it may not seem easy to bring up with your health care team, talking about your body image is important.

“In busy clinics, health care providers may not see your distress about body image and the impact on your life,” says D. Kathryn Tierney, Ph.D., RN, Clinical Assistant Professor from Stanford Health Care. So it’s important to tell them about any body image concerns you have. Don’t wait for them to ask. Say something like, “I know you’re focused on my physical health, but I’m really concerned about my appearance and how it’s changed since transplant. Can we talk about that?”

Many transplant centers have support groups that can help you cope with body image changes. Your social worker or nurse coordinator can help you find resources near you.

Dr. Tierney also recommends a program through the American Cancer Society called Look Good Feel Better. This free program offers resources for men, women and teens to help cope with appearance-related side effects of chemotherapy and radiation.

In the future, Dr. Tierney says researchers may “compare talk therapy to support groups or other approaches to help people regain a healthy body image.” But in the meantime, her advice is to simply talk. She says, “A discussion with your doctor, a close friend or loved one can help.” Find a trusted person and tell them how you’re feeling.

Free support is available

The Be The Match Patient Support Center can help you cope with body image changes after BMT. We offer:

  • One-on-one counseling services with licensed clinical social workers. They can help you cope with emotional concerns, including body image issues. Each session takes place weekly, by phone, for up to 8 weeks. Learn more at: org/Counseling
  • Connections with another transplant recipient or caregiver volunteer. Our trained volunteers can listen and share personal experience by phone or email. Request a connection at: Borg/PeerConnect

Just for teens

Watch “Does this transplant make me look fat?” to hear teens and young adults talk about their body image concerns after transplant. Ask your transplant center if there is a teen group or program you can join to talk with others your age about your experiences.

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.