Honored and humbled for a second chance at life

Posted June 13th, 2017 by Be The Match and filed in Patient Stories
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Khalia was just 3 months old when she was diagnosed with sickle cell disease. After 18 long years of dealing with pain, she finally received her cure: a bone marrow transplant from an unrelated donor on the Be The Match Registry®.

Khalia, transplant recipient (right), with her mom

Kimyacta, Khalia’s mom, remembers how ready she and her daughter were once the donor was identified. “We had many meetings to prepare us for this journey and the journey itself was literally life changing!”

Khalia is now pain free and enrolled in college where she’s pursuing her degree to become a Child Life Specialist. She and her mom continue to let others know how important it is to become a donor. “I hope I’m able to save a life just as someone did for my child,” says Kimyacta.

A bone marrow transplant is the only known cure for sickle cell disease. Join the registry and be someone’s cure!

“Having my wisdom teeth removed hurt worse …”

Posted June 13th, 2017 by Be The Match and filed in Donor Stories
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Samantha, marrow donor

“Honestly, having my wisdom teeth removed hurt worse than donating marrow. I was under anesthesia and not awake during the procedure. I was in the hospital at 5 a.m. and out by 11 a.m. For about a week and a half I was a little sore, like I had fallen down. And time-wise, it was nothing – especially compared to other things I’ve done, like being on the high school swim team with the grueling training before and after school.”

Samantha was fortunate to meet the man she donated to, Ron. “It’s mind-blowing and cool to think that something I did that was so simple let Ron walk his daughter down the aisle, see his son graduate from law school, and witness the birth of his first grandchild.”

When Samantha was 18, she was already a regular blood donor. When she learned about the need for marrow donors, she researched Be The Match online and joined soon after. “It just seemed like the right thing to do.” In October 2012, she got the call that she was a potential match for a 55-year-old man with acute myeloid leukemia. She went in for additional testing, then went on to donate.

Ron, transplant recipient, with Samantha, marrow donor

Samantha’s recipient, Ron

In 2012, Ron learned that his leukemia, which had been in remission for two years, was back. His doctors told him that a marrow transplant was his best and only hope for a cure.

With no siblings, Ron turned to Be The Match to find a donor match. Within the month, Ron’s doctors had narrowed the options down to two different donors – one of them a 21-year old from Texas—Samantha.

Ron and Samantha met in-person in 2014 at the Chicago Be The Match Walk+Run. Share in the moment which aired on Good Morning America.

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

Choosing transplant to cure her sickle cell disease

Posted June 12th, 2017 by Be The Match and filed in Patient Stories
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On August 1, 2012, Aya got her second chance at life while a patient at Hackensack University Medical Center – she received a bone marrow transplant that cured her of sickle cell disease (SCD).

Aya, transplant recipient

For Aya, her transplant was a welcome relief from a lifetime of dealing with her illness.

“I was born with sickle cell anemia,” she said. “One of the main stresses of the sickle cell disease is pain crisis. I began experiencing this painful ordeal from the age of three.”

After her first pain crisis, managing her symptoms became a familiar part of Aya’s routine.

“The ordeal would start with pain that would escalate,” she said. “When it got to its worst, my mom would have to take me to the hospital.”

Once in the hospital, Aya said her medical team did everything they could to help her manage sickle cell disease.

“Once they admitted me, the process would begin,” she said. “Generally, they would always hydrate me and give pain medication. I would always require oxygen – because of the pain, I could not take deep breaths.”

While Aya’s childhood revolved around managing her sickle cell, as she grew, her family knew she would need a bone marrow transplant.

“The older I got, my stays in the hospital increased and my pain levels would escalate,” she said. “I underwent a bone marrow transplant from an anonymous donor. The procedure was a success and I am now sickle cell free!”

A bone marrow transplant is the only known cure for SCD. Join the registry and be someone’s cure!

Being a voice for patients with sickle cell disease

Posted June 12th, 2017 by Be The Match and filed in Patient Stories
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Ines received a bone marrow transplant for sickle cell anemia in 2009 during her senior year of high school.

Ines, transplant recipient

Since her transplant, Ines has been focused on becoming a voice for other patients.

She studied molecular biology and English at the University of Pittsburgh.

Ines has also worked with the Children’s Hospital of Pittsburgh Sickle Cell Team as a research assistant. She has dedicated her life to sickle cell research and awareness – including sharing her story at legislative briefings where she offered her perspective on the treatment of sickle cell disease.

As her future continues to expand post-transplant, Ines said she is forever grateful that her match was found.

“My marrow transplant has made it possible for me to plan for the future instead of having to plan around my illness,” she said.

A bone marrow transplant is the only known cure for SCD. Join the registry and be someone’s cure!

Pulling together to overcome sickle cell disease

Posted June 12th, 2017 by Be The Match and filed in Patient Stories
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In January 2016, Desiree became the first adult at the Kansas City Cancer Center to be treated with a bone marrow transplant as a cure for sickle cell disease.

Desiree, transplant recipient

While Desiree was anxious, the timing of her transplant was critical – if her treatment was delayed, she was facing severe and irreversible lung damage that would have made her transplant even riskier.

Despite her nerves, Desiree said her support system got her through the time in the hospital.

“I don’t like being away from home, so it was hard spending all that time away,” she said. “Thankfully, my mother, sister and grandparents were with me the whole time. They put my needs before their own and made sure I had things from home to comfort me.”

Although her family was with her throughout her transplant journey, Desiree’s recovery was difficult due to a complication from sickle cell.

An earlier sickle cell pain crisis had left her with avascular necrosis in her right hip and barely able to walk. This condition occurs when bone tissue dies from lack of blood supply. Her doctors had her get out of bed and walk each day to regain her strength.

Now that she is healthy, Desiree said she is focused on helping raise awareness for sickle cell disease.

“We could cure others of the disease and find more perfect matches if more minorities were bone marrow donors,” she said. “Now I can go more places and do more things without having to worry about pain or being admitted to the hospital. I’ve missed out on doing and enjoying a lot but, my health is a lot better and continues to improve. I’m very optimistic about my future.”

A bone marrow transplant is the only known cure for SCD. Join the registry and be someone’s cure!

Justin’s journey with sickle cell and transplant

Posted June 12th, 2017 by Be The Match and filed in Patient Stories
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Justin had his first sickle cell crisis when he was six months old – for his mother, Kari, this was a day she will never forget.

Justin, transplant recipient

“He wouldn’t stop crying and nothing I did could help him,” she said. “This was the beginning of a lot of heartache, pain and tears, not just from him, but from me too.”

After tests showed Justin’s younger brother was not a match, Kari said the family was at a crossroads.

“My husband and I considered having another baby in hopes that this baby would save Justin’s life,” she said. “I prayed and there was a perfect match.”

Justin had his life-saving transplant in July 2014 – with Kari by his side for every step of the journey.

“I stayed with him every day,” she said. “When he hurt, I hurt. When he could not eat, I could not eat.”

While Justin has had some post-transplant complications including migraines and kidney issues, Kari said he is a healthy and thriving teenager.

“Life is great,” she said. “Justin gets to go to school and socialize. For so long, everything was about Justin and he was the only thing that mattered in our family. Now, life does not revolve around Justin and his sickle cell.”

A bone marrow transplant is the only known cure for SCD. Join the registry and be someone’s cure!

Taking a leap of faith for her cure

Posted June 12th, 2017 by Be The Match and filed in Patient Stories
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In 2008, twelve-year-old Amber’s fight against sickle cell disease had gotten to the point where she had suffered a stroke and had many surgeries.

Amber, transplant recipient

For the next two years, she and her family found themselves anxious as they were educated about a bone marrow transplant as a potential treatment option.

“My mom was scared,” Amber said. “It was a leap of faith.”

When doctors told the family that a 10/10 match was found, Amber put her nerves aside and prepared for transplant.

“I was afraid of losing my hair, chemotherapy and losing my friends,” she said. “I didn’t really know who else was going to be my match – if this unrelated donor would not have done it.”

After her transplant, Amber spent a month in the hospital before she went home to recover.

“It was difficult but, well worth it,” she said.

Now, as a healthy college student at George Mason University, Amber offers this advice to sickle cell patients contemplating a bone marrow transplant.

“Don’t give up hope,” she said. “You feel like you are going to be in pain forever but, just stay hopeful. You are already going to be in pain forever so, just hang in there for the transplant.”

While Amber has not met her donor, she said her entire family is looking forward to thanking the person who saved her life.

“I wouldn’t even be able to say anything – I would just cry,” Amber said. “I would tell them how thankful and how blessed myself and my family is because of this. This is not just about the patient who has sickle cell, this is about the family as well. I am so blessed and so thankful.”

A bone marrow transplant is the only known cure for SCD. Join the registry and be someone’s cure!

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.”