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
Show Content

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
Show Content

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
Show Content

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
Show Content

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
Show Content

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!

Superstar Advocate: Jeff Haertling

Posted June 4th, 2018 by Be The Match and filed in News
Show Content

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
Show Content

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
Show Content

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
Show Content

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
Show Content

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.