A Father’s Urgent Plea

Posted June 14th, 2017 by Be The Match and filed in News
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Kapil, searching patient

Kapil will be spend this Father’s Day with his three children. Nothing out of the ordinary has been planned, but for Kapil, it will be very special.

Earlier this year, Kapil was diagnosed with myelofibrosis, a disease that causes debilitating symptoms such as fatigue, abdominal discomfort, that affect the quality of his daily life. Doctors has given him 2 to 3 years to live. His only hope for a cure is a marrow transplant. Like 70% of patients, Kapil does not have a fully matched donor in his family and has turned to Be The Match® to find an unrelated donor.

“The best part about being a dad is seeing my kids happy. Seeing them blooming on their own, crossing milestones like going from speaking five works to a sentence,” said Kapil. Like all parents, he wants his kids to study hard and be good, contributing members of society. “I hope I am able to be there for that, but the reality is, there’s a chance I am may not be,” he said.

Kapil says he is truly touched by the outpouring support he’s received from the community. Friends, family and strangers have hosted marrow drives and/or joined the registry.

“I want to send a message to all those who are out there. That you have a chance to save somebody’s life. It may be mine, it may be a 3-year-old, a 9-year-old, a 21-year-old, it doesn’t matter. The point is, just be ready that if you are a match to please come forward and take the steps involved to donate stem cells. Cause for you it might be a blood draw, but for me (and others) its life-saving,” Kapil pleads.

This Father’s Day, be the hope Kapil and patients like him are looking for. Join the marrow registry at join.bethematch.org/HOPE4KAPIL.

June 19 is World Sickle Cell Awareness Day

Posted June 13th, 2017 by Be The Match and filed in News
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Constance, marrow transplant recipient

Did you know: in the United States, sickle cell disease (SCD) affects about 70,000-100,000 people. It is most common among African Americans and Hispanics, but is also found in other ethnic groups. The only known cure for SCD is a blood or marrow transplant, which replaces the patient’s diseased blood-forming cells with healthy ones from a matched donor.

SCD is an inherited disease, named for the crescent- or sickle-shaped red blood cells it causes. These defective cells can get stuck in small blood vessels, blocking them. This keeps red blood cells and the oxygen they carry from getting to all parts of the body. Complications of SCD can range from mild tiredness (fatigue) to more severe symptoms such as strokes, heart attacks, infections, organ damage and repeated episodes of severe pain.

A blood or marrow transplant is the only known cure for SCD. And because SCD disproportionately affects African American and Hispanic patients, there is urgent need to add more individuals of African American and Hispanic heritage to Be The Match Registry.

A legislative team from Be The Match will be in Washington D.C., for World Sickle Cell Awareness Day, advocating for increased awareness of SCD and the struggles patients and their families face, as well as secure additional funding to help more patients live longer, healthier lives.

Meet Kami, a courageous young girl living with sickle cell. Help her find a donor by watching and sharing her story

Leaders meet with congress members in support of improved Medicare reimbursement

Posted June 5th, 2017 by Be The Match and filed in News
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Capitol Building

On Tuesday, June 6th, leaders in the field of bone marrow transplantation (BMT), as well as NMDP/Be The Match, will travel to Capitol Hill to inform Members of Congress that inadequate Medicare reimbursement for transplant greatly impacts their transplant centers and patients. These leaders will urge Members of Congress to support upcoming legislation to align transplant reimbursement for bone marrow, peripheral blood stem cells and cord blood similarly to that of solid organ transplant.

Why are these meetings important?

Leaders will be meeting with Members of Congress in attempts to improve Medicare reimbursement for transplant. Currently, the Centers for Medicare & Medicaid Services (CMS) reimbursement for stem cell and cord blood transplant does not adequately cover the total costs of the procedure. As a result, hospitals lose thousands of dollars on every Medicare patient they treat. This is jeopardizing patient access to life-saving treatment.

Congressional supporters are working on a bill that would change the way donor search and cell acquisition are reimbursed through Medicare, thereby improving the overall cost of transplant. This change is reflective of the way the costs for solid organ transplant are currently reimbursed.

This important bill will likely be introduced in early June. Although it will have a very minimal impact on Medicare’s total spending, it will have an enormous impact to ensure that patients, ages 65 years and older, who need transplants will be able to receive them without facing financial barriers.

“We are hopeful that with advocate support, the Congress will pass this legislation which will successfully increase reimbursement for transplants, making this life-saving treatment accessible to all patients,” states Susan Leppke, Director of Public and Payer Policy at NMDP/Be The Match.

Learn more about the advocates

Dr. Eneida Nemecek, MD MS, MBA: Director of the Pediatric Bone Marrow Transplantation Program at Doernbecher Children’s Hospital and co-director of the Northwest Marrow Transplant Program at Oregon Health and Sciences University. Dr. Nemecek has spent years researching the latest advances in bone marrow transplantation and has seen first-hand how the procedure saves lives.

Dr. Daniel Couriel, MD, MS: Director of the Bone Marrow Transplant Program, University of Utah School of Medicine. Dr. Couriel has considerable work in researching new treatments and biomarkers for acute and chronic graft-versus-host disease. He has a history of consistent funding and has more than 100 peer reviewed journal articles.

Rocky Billups, MS: Vice President of Operations, Sarah Cannon. Mr. Billups has more than 20 years of experience in clinical practice and developing oncology programs. He is a professional member of the American Society of Clinical Oncology® (ASCO), American Society of Hematology® (ASH), American Society of Blood and Marrow Transplantation™ (ASBMT) and the Association of Community Cancer Centers (ACCC).

Jennifer Christian: Bone Marrow Transplant Director at the University of Kentucky. Ms. Christian has spent her career managing and operating bone marrow transplant programs, giving her a front row seat to the wonders of transplant. Her focus is primarily on quality, business, administrative, and operational matters of the BMT Program yet she has developed a unique and in-depth understanding of the clinical aspects of patient care.

How you can get involved

It will be very important for advocates to voice their support of this bill by contacting Members of Congress. Look for advocacy opportunities later in June to encourage your Members of Congress to support this legislation.

Looking for ways to support our legislative advocacy efforts? Sign-up for our Be The Voice e-newsletter and follow us on Twitter @BeTheMatch or Facebook to receive updates and learn how you can get involved.

If you are a match, it’s a miracle! Don’t question it, do it!

Posted May 12th, 2017 by Be The Match and filed in News
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Transplant recipient, Estevan

Carlos is a husband, father and golfer who loves to travel and spend time outdoors with his family. He’s also a frequent blood donor. It seemed like a natural choice to join the marrow donor registry. “My wife and I always knew we wanted to be donors.”

Having joined back in 2009, Carlos was shocked when he got the call that he was a potential match for a young boy with severe aplastic anemia. “It’s one of those things you don’t really think about after you register, until you get the call.”

Carlos describes the day of surgery as a little overwhelming, “seeing so many doctors, nurses, anesthesiologists and other medical professionals in my room to take me to surgery. All along the way, every single person told me how amazing I was. I was told I was a hero but, to me I was just doing the right thing, what I would hope someone would do for me or my family if necessary.”

“We were praying for the best possible outcome for this kid. It’s funny how we didn’t know him yet we prayed for him daily and asked our family and friends to keep him in prayer. We didn’t have a name to lift up but God knew who it was.”

Donation process

Carlos jokes that his main concern about the donation process was how long he’d have to be off the golf course. “It wasn’t hard. I was nauseous on the way home but, after that I was fine. My wife and I took our dogs for a walk the next day so the donation area would not stiffen and be too sore. I took the full seven days of recovery suggested and walked every day.”

And every day, they thought about the patient. “I just wanted to know how he was doing – hopefully I was giving this kid a chance at a normal life.”

Carlos’s prayers were answered. He learned that his recipient’s name was Estevan, a 13-year-old boy from Albuquerque, who loves playing basketball and video games. And Carlos learned what transplant was like form Estevan’s perspective.

 Estevan’s experience

“I’d never had chemo and it made me really sick. The day of the transplant, I was nervous. I was drowsy because of the pre-meds, but my mom, grandma, family friend and aunt were there with me.”

After the transplant, Estevan experienced fevers and infections, but he’s made a steady recovery. “I am in school and having fun with friends and cousins,” Carlos said. “It is good to be back around others.”

Estevan has this to say to Carlos, “Thank you very much for saving my life!” And Carlos has this advice to other registry members:Do it! Don’t think about it and over analyze it—just do it. If you are a match that in itself is a miracle, don’t question it, do it.”

Support for coping with nerve damage after transplant

Posted May 9th, 2017 by Be The Match and filed in News, Patient Stories
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May 7 – 13 is peripheral neuropathy awareness week. It’s not a common problem after transplant, but if you have it, you know it can affect your entire life – and not just physically.

Know the symptoms of peripheral neuropathy

Peripheral neuropathy is numbness and tingling in your fingers and toes. It can also cause pain, weakness, difficulty with writing, and problems with walking and balance. Even a light touch on the skin can be painful.

Everett, transplant recipient, with his doctor

Sometimes it can make your hands or feet more or less sensitive to temperature changes and pain. This may make it painful to step into the bath or shower. Or you may also be less aware of cuts or injuries to your feet. Find tips to stay safe and protect your hands and feet.

If you have any of these symptoms, talk to your transplant team. There are medicines to treat neuropathy and ease your symptoms.

Speak up!

“Advocate for yourself, and don’t minimize or play down your experience of pain or discomfort,” says Olivia Eusden, BMT Social Worker at Be The Match®. Olivia provides one-on-one counseling support over the phone to help patients and caregivers cope with transplant and recovery. She says “It’s important to listen to your body and track its changes.” If you struggle finding the right words to tell your doctor how you’re feeling, Olivia says, “Social workers at your clinic, or trusted family members and friends, can help you advocate for yourself.”

Get support

It’s also important to care for the emotional effects of peripheral neuropathy, says Olivia. She points out that when a chronic problem like peripheral neuropathy develops after transplant, it may be difficult for your loved ones to understand. “When people can’t understand something, they may be fearful and avoid talking about it. As a result, you may feel isolated and under-supported,” she says. If that happens, it’s important to take steps to break out of the isolation.

One way to get social support, says Olivia, is to help people help you. “Tell others how they can support you. Many people need direction when it comes to how to offer support. And, the support you need now may be different from support that others have given to you before or shortly after transplant.”

Olivia also suggests that you be gentle with yourself. “It takes time to adapt to peripheral neuropathy and figure out how to fit it into your life,” she says. “Take comfort in knowing that as with most new challenges in life, they start to make sense over time.” You can make sense of your life after transplant, including peripheral neuropathy, by reflecting on your transplant story. Olivia suggests, “Think about your experience with peripheral neuropathy and incorporate it into your new story. How we retell our stories shapes our personality, our future experiences, and old and new relationships.” Your story can empower you to move forward in your life after transplant.

Finally, Olivia suggests to “Practice self-care and spend time with positive people.” She notes that support from mental health professionals may also help you cope. “You can recover the support you need by seeing a licensed mental health professional,” she says. To receive free counseling support to help you cope with peripheral neuropathy or other challenges after transplant, call 1 (888) 999-6743 or email patientinfo@nmdp.org.

Connect with a peer

“Peer support is some of the best support for people coping with uncommon problems after transplant, like peripheral neuropathy,” says Olivia. Peer support can be in the form of a support group or one-on-one connections.

Support groups are safe spaces to share your fears and frustrations without feeling judged or misunderstood. People in a support group may understand life with peripheral neuropathy in ways that other people might not. There are groups that meet in person, online or by phone. Ask the social worker at your clinic for help finding a support group for you.

One-on-one support is another option. Our Peer Connect program can connect you with a trained volunteer who’s been there. Other recipients and caregivers, with experiences like yours, are available to talk by phone or email, sharing their experience and tips.

To request a connection, visit: BeTheMatch.org/patient-peerconnect

Two-time donor is a hero for a stranger and his brother

Posted April 27th, 2017 by Be The Match and filed in News
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Transplant Recipient, Juli with her Marrow Donor, Mike

When Mike joined the Be The Match registry, he was ready to be the life-saving donor for a patient in need – he just never imagined he would be a match for two patients in need.

About a year after joining, Mike got the call that he was a match and completed his marrow donation in June 2015.

When doctors told him that his recipient needed a T-cell booster and asked if he would also donate peripheral blood stem cells. For Mike, there was no question as to whether he would help again.

“I knew that I would not let this woman down,” he said.

Thankfully, Mike’s recipient, Juli, recovered and they were able to meet on October 7, 2016.

“It was awesome to be able to meet Michael and his family,” said Juli. “He was gracious, kind, but definitely not one to be in the spotlight for the amazing miracle he gave to me and my family.”

Shortly after the thrill of getting to meet his recipient, Mike was shaken by the news that his brother, Daniel, had been diagnosed with acute myeloid leukemia (AML).

As Daniel’s only sibling, Mike was immediately tested to see if he was a match.

“I was thinking, ‘Oh my God, please let me be a match,’” he said. “I know my body is capable of doing this.”

Mike and His Brother

Fortunately, Mike was a perfect match for his brother – to his and his family’s relief.

Mike again donated marrow on February 14, 2017 and was able to be his brother’s life-saving donor.

Knowing that he has given two people, one a stranger and one his brother, a second chance at life, Mike said still feels in awe that he was able to be an unrelated and related donor.

“We feel like Juli’s situation enabled my brother to get help,” Mike said. “You do what you can – I try to be an example. If you can do something to help someone, you help them.”

You can help ensure older patients get the transplant they need

Posted April 18th, 2017 by Be The Match and filed in News
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The number of older patients receiving a marrow transplant has increased significantly in recent years. But due to Medicare payment policies, transplant centers are losing thousands of dollars on each Medicare beneficiary they treat making it difficult for them to continue performing transplants for these patients.

Ed, marrow transplant recipient

In 2015, 138 hospitals around the country provided this life-saving therapy to nearly 1,200 Medicare beneficiaries. Patients like Ed, who received his transplant when he was 68 years old.

“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.”

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.

“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.

Medicare patients need your help
We need your help to ensure patients who are Medicare beneficiaries have the same access to transplant as those who have commercial insurance.

What Medicare reimburses hospital transplant centers does not cover the costs of searching for a donor and obtaining their cells. If CMS does not reform the current payment policy for transplant hospitals will not be able to keep treating Medicare patients, like Ed.

This spring, the Centers for Medicare and Medicaid Services (CMS) will determine the Medicare payment policy for inpatient transplants for the coming year.

Please submit a comment letter to CMS urging them to adequately reimburse for marrow transplant so patients can get the care they need. You can customize our pre-written letter and send it directly to the decision-makers at CMS.

We need comments from passionate people like you to help CMS understand how important this is. Thank you for your support!

Interested in legislation and policy changes that affects transplant patients? Learn more at BeTheMatch.org/advocacy.

College student highlights benefits of service internships through Be The Match®, calls for more students to try the experience.

Posted April 3rd, 2017 by Be The Match and filed in News
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When looking for an internship in college, many students find the process stressful. While paid internships may seem more desirable to students, service internships have the appeal of gaining broad experience while earning school credit. For Alicia Reibling, upon learning about service internships through Be The Match, the experience she would gain was the biggest advantage to accepting a position.

Alicia

Alicia, Be The Match Service Intern

Alicia began her service internship at the start of Summer 2016. As she was finishing her junior year at Bethel University, Alicia wanted to gain a broad experience in human resources. She identified early on the positives of doing a service internship, but also acknowledged the potential financial hardship.

“Balancing time and money were hard, but the long-term benefit of this service internship is already outweighing the short-term financial gain of simply having a summer job or a paid internship that offers less flexibility,” Alicia says.

Now a senior majoring in Human Resources, Alicia was looking to learn about the various aspects of human resources – hiring, benefits, workplace functionality, and others. Instead of accepting an internship focused on one area within that department, she decided to take a service internship with Be The Match – one that offered her the flexibility to learn about human resources as a whole instead of just one aspect of it.

“I think that the biggest benefit of completing this service internship has been the experience in such a wide variety of areas as well as the connections I’ve made. People at Be The Match are so passionate about the mission and are so thankful for the time service interns spend at the office. I felt like I was learning a ton while also giving back,” Alicia recalls.

Service internships at Be The Match

Be The Match has a variety of service internships available at the Coordinating Center located in the North Loop area of Minneapolis. Internships are offered in a variety of departments and can be offered for school credit. Each internship is different based on the intern, and many can be molded to fit your personal career and experience interests.

“Be The Match gives you a chance to work for a purpose. You get your foot in the door at a great organization, which is important for the future,” Alicia says.

Interested in being a service intern? Explore those opportunities online.

Butler Marrow Donor Encourages Others To ‘Be The Guy’

Posted March 28th, 2017 by Be The Match and filed in News
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DSC_0584.JPGThis Thursday marks the 29th annual State Farm Slam Dunk & 3-Point Championships that will feature 24 of the best collegiate dunkers and sharpshooters. Chase Stigall, a former Butler basketball player and marrow donor, is traveling to Phoenix for the event that is part of the NCAA Final Four festivities. Chase will have a chance to talk to the players about his donation experience and will also be recognized on the court during the live event.DSC_6598.JPG

The former Bulldog will feel quite at home. Chase was part of the back-to-back championship game teams in 2010 and 2011. He’s looking forward to speaking about his marrow donation experience with the college athletes. “I was just in their shoes,” says Chase. “Except one of my teammates is no longer with us.”

That teammate was Andrew Smith. At the age of 25, Andrew lost his battle with blood cancer.

Chase rallied along with the Butler community in honoring Andrew through Project 44, a partnership between Butler University and Be The Match®. Knowing that 1 in 430 go on to donate marrow, Project 44’s goal is to add 18,920 people to the registry so that they can save 44 lives. 44 was
Andrew’s jersey number.

Last summer, Chase got the call that he was a match for a 2 year-old boy.

“I had no second thoughts,” says Chase. “I was just excited. I called Andrew’s wife to tell her that Andrew is still working to save lives while he’s up in heaven watching over us.”ChaseStigall_Donation

For Chase, donating was simple and easy. “When I woke up, my lower back was sore,” Chase says. “I hurt more getting undercut during a Butler basketball game.”

Chase’s dream is for all Division I college athletes to join Be The Match Registry®.

“The best thing about donating is knowing that you are helping someone else,” says CDSC_4756.JPGhase. “You are giving that person the ability to hopefully overcome their sickness.”

The State Farm College Slam Dunk & 3-Point Championships is part of a series of sports-focused sponsorships Be The Match has partnered with, all in the hopes of getting committed young men to join the registry.

For more information about marrow donation, and the need for young men to join the registry, visit BeTheGuy.org.

 

Be The Match Walk+Run events bring supporters together

Posted March 27th, 2017 by Be The Match and filed in News
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Ari M.

Ari, transplant recipient

Easter Sunday 2013 is a day that one Minnesota family will never forget. Earlier that spring, Glennae Meyer began to notice that her 8-month-old son, Ari, was not his smiley, happy self. In the weeks following, Ari would go hours without eating, continuously battled ear infections and pneumonia. He was given an oxygen machine to help him breathe – all while his white blood cell count dropped to a scarily low level. By Easter, Ari’s doctors had finally diagnosed him with Hyper-IgM, an auto-immune deficiency.

They told Glennae that a marrow transplant was Ari’s best chance for a cure, but like 70 percent of patients, Ari did not have a fully-matched donor in his family. Ari spent seven weeks in the hospital before receiving his lifesaving marrow transplant from an anonymous donor in July of 2013.

Bwalk16_Mpls_075

Minnesota Senator Klobuchar

Now, more than three years later, Ari continues to get stronger. He and his family try to attend the Be The Match Walk+Run in Minneapolis each year – an event bringing together Be The Match supporters, transplant recipients, donors, searching patients, and their families and friends.

Last year, Minnesota Senator Amy Klobuchar (D) attended the Minneapolis Walk+Run, in support of those affected by blood cancers and other diseases – like Ari and his family. She spoke to the crowd before the race about the importance of bone marrow and stem cell transplantation. She also talked about her support for funding the C.W. Bill Young Cell Transplantation Program.

Encouraging your legislators to join community events that are important to you is a great way to get them involved and understanding of the issues that matter to you most. Learn more about Be The Match Walk+Run events.