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.
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.
Sandy and her husband Jared try not to take anything for granted. They believe that even the most trivial things, like walking outside or going to the store, are moments to be grateful. “You value life so much more when you have watched someone fight for theirs,” said Sandy. Since their son, Dalton was eight weeks old, Sandy and Jared have watched him battle for his life and, ultimately, win.
When Dalton was only two months old, he started to experience frequent bacterial and skin infections. After months of appointments, which produced few answers, doctors finally learned that Dalton’s symptoms were a result of a much larger issue: a genetic immune system disorder called severe combined immunodeficiency (SCID). The diagnosis was very scary; Sandy and Jared were told that if untreated, babies with SCID usually die within a year.
Thankfully, Dalton was lucky. Multiple matches were identified and shortly after, Dalton’s doctors requested additional testing to determine which donor would be his best chance for survival.
Before his transplant, Dalton underwent eight days of high dose chemotherapy to prepare his body to accept the new donor cells. While Sandy and Jared knew that a marrow transplant was Dalton’s best hope, watching their child suffer was emotionally taxing. For Sandy, the 100 days post-transplant were “the scariest and most stressful of my life,” she said.
After a long recovery, Dalton was finally able to return home. “You look at him now,” said Sandy, “and you would never know what he has been through. He has gained weight and has his hair back. He is making up for lost time!”
Without a transplant, Dalton might not be alive. This September at the Be The Match Annual Gala, the family got the opportunity they had been waiting for – the chance to thank the stranger that saved their baby’s life. For the first time, Dalton, Sandy and Jared met Dalton’s marrow donor, Dennis, a fire chief from Boise, Idaho and got the chance to thank and hug Dennis for the gift he gave Dalton.
This Thanksgiving, Dalton’s family is thankful for Dennis and all Be The Match supporters. “Thank you will never be enough,” said Sandy, “but it is all we have. It comes from the bottom of my heart.”
This Thanksgiving, you can help give a child the gift of life by supporting the life-saving work of Be The Match. Your gifts help more patients get the marrow donation they need.
*If the donor center allows and both parties consent, a donor and recipient or a recipient’s guardian must still wait one year before they can exchange contact information and meet in person.
The life-changing call:
On September 9th Duke’s phone rang. Expecting one of his four children or his parents, he picked up the call. Instead, he heard the voice of a man he had never met – an oncologist. “I need you to come to the hospital tonight,” the doctor told Duke. He broke the news directly, “you have leukemia.”
Duke was at the hospital earlier that day being tested to determine the cause of his declining condition. He knew that something was wrong and was actually relieved to learn of the diagnosis and begin working out a treatment plan.
Shortly after arriving at the hospital that evening, Duke underwent additional testing. Within a day, his results were back. He was then faced with an even harder fact to comprehend, a fact that would shake his entire world: without immediate treatment, Duke only had a month to a month and a half to live.
That was six years ago, when Duke was 44. Thanks to a complete stranger, an ocean away, Duke is alive to share his story of faith, good fortune and, above all – survival.
The fight to survive:
Shortly after Duke was diagnosed, he started chemotherapy. Amazingly, after a year of extremely aggressive treatment, Duke was pronounced cancer free; but he wasn’t in the clear just yet. His doctors told him they were certain the cancer would come back, and when it did, the disease would be stronger and more aggressive.
Unfortunately less than nine months later, the doctors’ prognosis was right. Duke’s cancer was back, and this time, he needed more than chemotherapy to survive. “My diagnosis was aggressive, so they knew they were going to have to do something to try and save me. The doctors told me, you aren’t going to survive without a marrow transplant,” said Duke.
The search for a match began by testing Duke’s siblings. When they tested negative, his doctors turned to the Be The Match Registry. That’s when Duke won what he would later call his “lottery ticket,” – a matched marrow donor. After intensive chemotherapy to prepare his body, Duke received the transplant that saved his life.
The meeting of a lifetime:
Immediately after his transplant, Duke knew he wanted to meet the young man that gave him his life back. “In my mind, I must have painted my donor a million different ways. I had thousands of questions for him,” said Duke.
In America, if both parties agree and the transplant center allows, a donor and recipient can meet one another, but must wait one year after transplant. Because Duke’s donor was from Germany, the waiting requirement was longer. After two years, Duke was finally able to reach out to the man who, at 27, saved his life by donating Peripheral Blood Stem Cells (one of two methods of marrow donation). Duke offered his donor the opportunity to fly to Colorado so they could meet.
In October, Duke’s donor, Marco, did just that. Before he arrived, Duke had so many things he wanted to tell Marco, but most of all he wanted to say thank you. “There is a cascade effect when someone is diagnosed. It cascades to family to friends, to a huge amount of people, not just one. I wanted to make sure Marco knew that what he did affected a lot of people. I wanted my entire family to have the opportunity to give him a big hug and say thank you”
Marco and Duke spent the next 10 days together, getting to know each other and developing a deep bond. “It was definitely a connection we will maintain,” said Duke.
The blessings along the way:
When Duke looks back on his experience, he believes God had a plan for him and this faith is what helped him through the entire ordeal. “If everything was perfect, and bad things only happened to bad people, life wouldn’t be as brilliant as it is,” he said. “Bad things happen to good people too, there is no way around it, this allows us to realize just how fortunate we are.”
In addition to recognizing how fortunate he was, Duke learned something else about himself – he is stronger than he ever could have imagined. “You may think you know how you would respond to a life-changing event, but I would argue that you will never really know how strong you are until you are in the foxhole, fighting for your life,” he said.
Marco did what he promised, donated marrow to save a life. “At the end of the day, that’s what you want. You want everyone to have the chance like I did,” said Duke.
“Never. Ever. Givvvve up! Never. Ever. Givvvve up!” This is the cheer of smiling, bubbling, 4-year-old Jade. What is she cheering for? Courage to beat her cancer.
A fighter from day one, Jade’s journey began with unexplained episodes of limping, joint pain and fever. An otherwise healthy toddler who could run circles around her older brother, Jade’s parents, Jaytoe and Taneika, were puzzled. Multiple visits to the emergency room and they still didn’t know what was wrong.
On January 5, 2012, a few days after celebrating the New Year, Jade was admitted to the hospital for a persistent eye infection. Trusting their gut, they asked for additional tests. “We figured while we were there, why not get to the bottom of it once and for all,” says Taneika.
Eager to help, Jade’s doctors listened to the list of symptoms and explored many options. Ultimately, the news was devastating. Little Jade had cancer—acute myeloid leukemia (AML). “We were floored. It was hard to swallow because she wasn’t even two years old yet. We were still getting to know her and watch her grow, but hearing this diagnosis almost felt like a death sentence,” says Taneika.
Eight months and five rounds of chemo later, Jade was in remission. Like any parent, Taneika was overjoyed, but she was worried that it was too good to be true. They filled their days with fun activities like visiting museums, baking cookies, painting and dancing to Jade’s favorite tunes. “Our family had a renewed sense of living life to the fullest, but I always felt like I was looking over my shoulder.”
When Halloween arrived, Jade was old enough to help pick her costume. “She absolutely loves dressing up and equally loves ‘saving the day,’” says Taneika. “Familiar with traditional princess costumes she was soooo excited to see the warrior princess Wonder Woman costume.” Completely thrilled, Jade declared herself “Super Wonder Jade” with powers to fight the “bad guy cells.” The nickname stuck and Jade continues to call herself this today.
On March 19, 2014, just a few weeks shy of celebrating Jade’s fourth birthday, her leukemia resurfaced. “It was harder to hear the news the second time. We thought we had it beat, but we didn’t,” says Taneika.
Immediately, Jade’s doctor’s explained that a marrow transplant was her best shot for a cure. “They told us that relapsed AML was more difficult to treat. They also told us the likelihood of finding an unrelated donor was very low because of how uniquely made Jade is, because of our ethnic backgrounds.” The frightened family knew it would be a tough battle, but brave Jade took the news with grace.
“Jade returned to the oncology floor like she owned the place,” says Taneika. “Wandering the halls, serenading the staff at the nurses’ station, and quickly finding her place in the art room.” But, despite the familiarity, things were different. Jade was a big girl now. “The halls were the same, the staff was the same, but Jade had the ability to ask questions like: Why are we here? When are we going home? Why can’t my friends come over?”
Thankfully, Jade’s cheerful nature quickly won over and she settled into her routine filled with activities such as singing “Let It Go” as she said good bye to her hair, swishing “magic mouthwash” to lessen the pain of mouth sores and earning more than 500 beads of courage—one for every procedure.
In her journal, Taneika wrote, “Jade was so playful, so brave and so strong throughout her treatment, even after a rough chemo session. And she would just say, ‘I’m smiling for me.’ We absolutely believe that her spirit and attitude helped her heal… helped strengthen our faith and our resolve that she would be cured.”
Finally, on July 3, after months of searching, transplant day arrived. Unable to find an adult donor, doctors located a 5 out of 6 cord blood match.
Pronounced Jade’s “re-birthday,” the special day was filled with celebration banners, cupcakes and Jade’s favorite thing in the world—music. “She proceeded to dance for an hour straight, grabbing our hands and pulling us to the dance floor one by one,” says Taneika.
Exhausted, Jade finally fell asleep as nurses hooked up an IV pole for her new, life-giving cells to drip slowly into her body. “When you hear the word ‘transplant’ you think surgery…sedation…but it was not like that at all,” says Taneika. “The whole process took less than two hours.”
The Jade Parade
Twenty-four days after transplant, Jade was allowed to make her first trip home. Having seen parade-like, end-of-treatment celebrations before, Taneika was overcome with emotion as Jade exchanged her Beads of Courage for her requisite sunglasses, high filtration mask and tiara. “She went out in style, leading the staff decisively toward the elevator cheering, ‘I’m brave, I’m strong, I’m ready for whatever comes along,’” says Taneika.
By day 29, Jade was 100% donor cells. She did experience some early setbacks with graft versus host disease (GVHD) and liver damage, but Jade is currently healthy, happy and cancer free.
Taneika is at a loss for words when thinking about the gift their family received. “Thank you seems inadequate… We wish there were words beautiful or accurate enough to fully express our gratitude for this incredible gift — for saving our daughter’s life and keeping our family whole,” she says.
“With each milestone that Jade reaches, every smile that she cracks, each hug that she shares with us, we are eternally grateful to the mother who made this possible when she donated her newborn baby’s cord blood, to Be The Match for facilitating her gift, and to Jade’s medical team for their incredible support. We thank God for them all. We will certainly be reflecting on that this holiday season and hoping not only for Jade’s continued remission, health and overall rock-stardom, but also for a match and a cure for all of the parents, grandparents and children who need it.”
The family is also grateful people like you who support Be The Match by making a financial gift. “Thank you for helping to give meaning to Jade’s journey. We often ask and wonder, ‘Why Jade? Why did this happen to our sweet girl?’ There will never be a satisfactory answer to those questions, but we are so heartened that her story, her spirit inspired you to make a gift that will help heal another family like ours that has been turned upside down by cancer.”
Help kids like Jade. Give a child the gift of life.
In September, ABC’s Good Morning America broadcast a special first-time meeting of a Staten Island, NY man who beat lymphoma and the Dallas marrow donor who helped him do it. Unbeknownst to them, they led parallel lives: both 35, married and each a father with young children.
The title: “Dad” means everything to both of these men. So, it was no surprise that as excited as they were to meet, they turned their good news into an effort to help another young father searching for a marrow donor.
The dads are spreading the word about Tamino, a father from NYC suffering from Severe Aplastic Anemia. They’re asking others to join the Be The Match Registry® online in hopes of finding Tamino a life-saving marrow donor so he can watch his one-year-old son, Matteo, grow up. Currently there is no match for Tamino on the Be The Match Registry. He is of Brazilian, French, Italian, Bolivian and Colombian ancestry.
“No child should grow up without a father, not if we can help it,” said Justin Jenkins the Dallas dad who donated marrow so Staten Island father Joe Yannantuono could watch his 4-year-old grow up.
“Let’s find Tamino a marrow donor. Help teach his young son, Matteo that the world may be big, but it’s full of people willing to stop what they’re doing for a moment to help a little boy in Queens who needs his daddy.” Join the registry online at join.bethematch.org/tamino.
Share this message and help spread the word. If you’re not a match for Tamino, you may match one of the thousands of other patients battling blood diseases and searching for their cure.