On June 12, Be The Match staff, representatives and advocates took to Capitol Hill in Washington, D.C. for the organization’s annual Legislative Day.
With more than 80 meetings with legislators and their staff, Legislative Relations Director Chad Ramsey called the day a resounding success.
“We garnered support for continued program funding, as well as interest in our new Congressional Caucus to Cure Blood Cancer,” he said. “We also had important conversations with legislators that should help improve access to transplant for all patients.”
With a focus on ensuring access, Be The Match advocates and staff set out to educate legislators on three main topics: protecting access to transplant for Medicare patients, ensuring adequate coverage for transplant throughout the new health care system and understanding the continuing impact of sequestration.
Be The Match advocates and staff discussed the need for Congress to ensure inclusion of transplant in the networks of coverage created by the new health insurance marketplaces and adequately reimburse transplant therapies for Medicare patients.
In addition, funding for the C.W. Bill Young Cell Transplantation Program and the National Cord Blood Inventory, both operated by Be The Match, was recently cut by $3 million as a result of sequestration. This means that as many as 20,000 willing volunteer marrow donors and 1,000 cord blood units may not be added to the Be The Match Registry, unless funds to the programs are restored.
By addressing these crucial topics, Legislative Day participants helped legislators understand how they could save more lives by supporting Be The Match.
“We urged Members of Congress to protect access to transplant and to restore full funding to the C.W. Bill Young Cell Transplantation Program and the National Cord Blood Inventory,” said Ramsey. ”When Members of Congress get to meet with the patients whose lives have been fundamentally changed because of the programs they have supported, it brings about a whole new level of commitment.”
In addition to strengthening legislative support, Be The Match representatives attended a donor drive hosted by the Department of Defense, where 23 people joined the registry.
Legislative day is over, but we still need your support. Continued funding can be the difference between life and death for patients in need of a bone marrow transplant. Be the voice that saves a life. Take action now.
“I felt it was a privilege and an honor to be able to give something that my body makes every day and be able to save a life,” Altonet recalled.
Altonet donated traditional bone marrow. Because she was under anesthesia, she did not feel any pain during the procedure. While she was sore for several days following the donation, she was able to go back to work within two days. Several months after her donation, Altonet learned that the recipient was doing well and was released from the hospital just months following the transplant.
Of her recipient, Altonet notes, “the one thing she taught me was how to love a stranger. Because I don’t know her, but I love that she is able to endure through such a difficult time. I prayed for her more than I prayed for myself or anyone else in a long time.”
Altonet has a compassionate heart for people, and a passion for singing. In fact, she’s competed on three national talent shows—Star Search, American Idol and Showtime at the Apollo.
Now she is lending her voice to help others by encouraging more people—especially those from the African American community—to follow her lead by joining the Be The Match Registry as potential bone marrow donors and saying yes if called as a match for a patient.
Before going through the donation process, Altonet heard a lot of common myths about donation – that it is painful and dangerous. “I want people to know that each individual’s experience is uniquely theirs. Don’t listen to what you may have heard—speak with people that are able to give you correct information about the process. It’s a rewarding experience and if you are ever selected to donate bone marrow then you should definitely consider it.”
Like Altonet, you could be the cure for someone with a disease like sickle cell anemia or a blood cancer like leukemia by donating bone marrow. It only takes a few minutes to join the Be The Match Registry. If you match a patient, you could be the only one out of millions who can save that patient’s life. Get the real facts about bone marrow donation at BTMItsOnYou.org.
Josh was diagnosed with sickle cell anemia at birth, a painful and life-threatening blood disease that most commonly affects African Americans. His first crisis from the disease occurred when he was only 6 months old. Although his spleen was removed to prevent another crisis, Josh suffered a stroke at 18 months old, paralyzing his right side of his body.
Now, at 7 years old, Josh’s best chance for a cure is a bone marrow transplant. Like 70 percent of patients, Josh does not have a matching donor in his family. His family, friends and even ABC’s Good Morning America have helped him in his search—hoping to find a match for Josh and others in need of a life-saving transplant. But out of the 11 million potential bone marrow donors listed on the national Be The Match Registry®, not one is a match for Josh.
Josh’s search for a match is more challenging, because of his African American heritage. Patients are most likely to match someone who shares their ancestry, and African American patients have the lowest odds of finding a match compared to all other populations. More African American donors are urgently needed to save more lives.
Vera, Josh’s mom, knows there is hope. “We know there is a match out there,” said Vera. “We just need people to step up and join the registry. Unless you actually go out and get tested, you may never know if you could be the one to save someone’s life.”
Donating is simple
Kendall, 20, knows first-hand the impact that bone marrow donation can have on a patient. Her mother donated bone marrow twice to her uncle to help him fight leukemia. While Kendall’s uncle did not survive, she was struck by the hope bone marrow donation gave her family. When she was old enough, Kendall joined the Be The Match Registry as a potential bone marrow donor in memory of her uncle.
Several months after joining the registry, she learned that she was a match for a young African American girl with sickle cell anemia. In late 2013, Kendall donated peripheral blood stem cells through a non-surgical, outpatient procedure. She was back to work within two days of her donation.
“I think that bone marrow donation sounds like it might be a hard process to go through, but it was actually really simple,” says Kendall.
Kendall has yet to meet her recipient, but already says she would donate again in a heartbeat. “I know she’s young, probably a strong girl, and if she ever needs anything from me in the future, I’ll definitely always be willing to help.”
It’s on you
You could be the cure for someone with a disease like sickle cell anemia or a blood cancer like leukemia by donating bone marrow.
July is African American Bone Marrow Awareness Month, and Be The Match® is partnering with patient families, like Josh and Vera, and donors, like Kendall, to urge more African Americans to join the Be The Match Registry as committed potential bone marrow donors.
Help save more lives. Get the real facts about bone marrow donation at BTMItsOnYou.org. Take action today.
In September 2011, the young men joined the Be The Match Registry through an effort at their Arkadelphia, Arkansas campus to help a man with a blood disease hopefully find a donor. While the drive raised awareness and registered donors, no match was found and the gentleman passed away.
Although the drive did not produce a match, Justin said attending the event gave him the education and push he needed to make the life-changing decision of joining the Registry. “Giving blood is common,” he said. “I hadn’t considered donating bone marrow for myself because I didn’t know the process.”
After becoming registry members, both men were successful matches. Kyle donated PBSC in the summer of 2012 while Justin got the call that he was a potential match in February 2013. After completing the required blood work, Justin was notified within a week that he was the best match for an international patient from Europe who was suffering from a blood disease.
Upon hearing that he was a match, Justin’s family and friends provided the emotional support he needed as he began the donation process. “A lot of my family was very excited about it,” he said. “Everyone at my school was very supportive, seeing as it was the right thing to do.”
Along with family and friends, Justin said his connection with transplant coordinator Jennifer was a defining part of his donation. “She was awesome,” he said. “She kept up a good relationship.”
For Jennifer, a search and retention specialist with the Scott & White Marrow Donor Program, a donor center that works with Be The Match, working with Justin exemplified what she loves about her career. “The best part of my job is watching these young people rearrange their lives to give a gift to someone that they may never know,” she said. “Our youth are finding ways to make changes in the world, and our Be The Match Registry fits in so well with how our younger generation can make an impact in the world around us.”
Throughout their partnership, Jennifer said Justin could not have been more dedicated to doing whatever necessary to donate. “He was class president, taking a full load of classes and working a summer job at a camp that required 24/7 availability,” she said. “If he told me he was unavailable for a summer collection, I could understand that. But he didn’t.”
As they neared Justin’s July 2013 collection date, Jennifer said they worked together with the hospital to schedule the needed pre-transplant blood work on weekends to accommodate his schedule. “All of these things ultimately give the gift of life to his patient and created a terrific bond between the two of us,” she said.
With Jennifer’s assistance, Justin said donation was an “absolutely excellent experience.” He donated in Dallas, Texas with his mother and grandmother at his side for the entire six hours. “It is an enriching, enjoyable process,” he said. “The giving process is not painful at all.”
Just as Justin was impacted by donating PBSC, Jennifer said watching him go through the process left her equally inspired. “Personally, I have an 18-year-old,” she said. “If my son becomes as responsible and focused as Justin, I would be so pleased.”
According to Lora, Heather’s support helped her fight the aggressive, high grade cancer she was fighting. “She came and lived with me during my cancer,” Lora said. “She went to chemo and radiation with me. You can’t explain the debt I have to her.”
In 2009, when scans showed Lora’s cancer was in remission, her life forever changed. “You appreciate every second – every sunshine,” she said. “You look through different eyes.”
With a deep sense of gratitude, Lora knew she wanted to give hope to others facing serious illnesses – her opportunity came in 2009.
As a Greater Michigan District Coordinator for the United States Postal Service (USPS), Lora became involved with the Delivering the Gift of Life campaign – a partnership between USPS and Be The Match aimed at recruiting USPS employees and their families to join the Registry.
With the help of Eric, a Be The Match senior community engagement representative, Lora personally called 496 of the 497 post offices in her district to recruit Registry members. The result was adding 792 new potential donors to the Registry – the highest number of new members from USPS that year.
One of these new members was her daughter Heather, who ended up being a match herself.
For Lora, knowing that Heather was a patient’s life-saving match brought her experience with cancer full-circle.
“I think when they tell most cancer patients that they won’t survive and you do, you look for a reason why – almost survivor’s guilt,” she said. “I went to look for that. I thought maybe I was meant to save a life. I thought if I could make one match, it would be worth it. You can imagine my surprise that it ended up being my daughter. I don’t think a mother could have been prouder when she told me.”
For Heather, her mother’s drive to live and help others was inspiring.
“When my mom was diagnosed, it was not expected,” she said. “Mom decided it wasn’t going to beat her and she wanted to help other people.”
When she herself was called as a match, Heather said her PBSC donation was an enriching experience.
“I would definitely do it again,” she said. “People say I’ve given a gift of life. I just feel like someone needed something and I did it. I’m happy to do it – I would do it again.”
While Heather was the life-saving match for a patient in need, her mother was honored for her Registry-building efforts at the 2010 Be The Match Minneapolis Tribute.
Still involved with promoting the Be The Match mission, Lora said her journey through cancer will always impact her life.
“It was put in your path for a reason,” she said. “I was searching for my reason and I think I found it – just knowing that my daughter’s recipient has time.”
The couple, who live near Gainesville, Fla., has nine children. And since the birth of their first son Nathan in 1999, they have chosen to make each birth an opportunity for someone else by donating the newborn’s umbilical cord blood to a public cord blood bank.
“We like the idea of giving to someone else,” said Lindsey.
The stem cells in umbilical cord blood can be used by patients facing serious illnesses such as leukemia and lymphoma, whose best hope for a cure is a blood stem cell transplant. These stem cells act as seeds to help regrow a healthy immune system.
Donated umbilical cord blood suitable for transplant is listed on the Be The Match Registry® where it is made available to any patient in need of a transplant. Most patients do not have a matching donor in their family and rely on Be The Match® to find a matching adult marrow donor or donated umbilical cord blood unit for transplant.
Be The Match gives doctors access to 601,000 donated umbilical cord blood units worldwide. More donations—and a greater diversity of donors—mean more people have the potential to find a match.
Despite its potential, most umbilical cord blood is discarded. Often, this is simply because expectant parents do not know about the option to donate umbilical cord blood.
Dan and Lindsey explained that when they were expecting Nathan, about midway through the pregnancy, their doctor brought up the idea of umbilical cord blood donation as “something you might want to think about.” Until, then, neither knew much about it.
“He started preparing us, gave us some material to read,” Dan recalled.
“I thought it was a great idea,” Lindsey said.
On the big day, while Dan and Lindsey were admiring Nathan for the first time, Lindsey hardly noticed the doctor was busy collecting the blood from the umbilical cord.
“It doesn’t hurt the baby, isn’t invasive and has the potential to help,” Lindsey said.
Because there is no cost to donate umbilical cord blood to a public bank and the process was so easy, Dan and Lindsey chose donation when all of their other children were born too—Isaac, 12, Lydia, 10, Isabella, 8, Amelia, 6, Joel, 5, Wyatt, 3, Theo, 1, and Eleanora, 4 months. The family has donated umbilical cord blood nine times. And when Dan and Lindsey learn that a friend is expecting, they don’t wait to be asked, but offer that same suggestion their doctor offered years ago.
So, this Mother’s Day, Lindsey knows what’s in store. “They make me little things, it’s so sweet,” she said.
And this year they have another reason to celebrate. The family recently learned that one child’s donated umbilical cord blood may be a match for a patient in need.
“I think we were all excited that night at the dinner table when we heard that,” Lindsey said.
For more information on umbilical cord blood donation go to BeTheMatch.org/cord.
Moving your care from your transplant doctor back to your primary care doctor or hematologist/oncologist is a milestone in your recovery. It’s very normal for patients to feel nervous about this important transition. Transplant recipient Elizabeth talks about her experience with this transition and transplant doctor Navneet Majhail explains how you can help make it a smooth one: “Prepare, communicate and advocate”, he says.
Gather your treatment history to share.
- The names and doses of chemotherapy or radiation therapy you received as part of your conditioning or preparative regimen before transplant.
- A record of complications you have experienced, such as graft-versus-host disease (GVHD) or infections.
- A list of signs or symptoms of post-transplant complications including GVHD.
- The names and doses of all your medicines, including vitamins and herbs.
- A list of the tips your transplant doctor recommends for you to help you stay healthy. This could include things like avoiding too much sun or doing stretching exercises.
- A list of the follow-up exams and tests that your transplant doctor recommends for you. Be The Match offers free post-transplant guidelines available in a variety of formats—smart phone app, print and online. This guide is based on expert recommendations and provides information on the recommended tests and evaluations for your follow-up appointments. You can share it with your primary care doctor.
Help your health care team help you.
“While it may be different for you, your primary care doctor will likely take care of general health maintenance, like checking for and treating heart disease or diabetes. Your transplant physician will handle transplant-specific issues (like GVHD). It’s important for your doctors to share information about your care with each other, and with you. Understanding how they will communicate can help you feel confident that you’re getting the best care.”
Questions to ask your doctors include:
- Who will manage which parts of my care? How are your roles different?
- How will the transplant center share information with my primary care doctor?
- How will my primary care doctor communicate with the transplant center?
- How will the information be shared with me?
- What should I do to keep in good general health?
- What specialists might I need, such as an ophthalmologist (eye doctor) or dentist?
“Some issues require all of your doctors to work together. One example is post-transplant vaccinations. Your transplant doctor may recommend them, but you might get them from your primary care doctor. Over time, as transplant-related issues decrease, interactions with the transplant team will decrease, and the primary care doctor will become your main health care provider.”
Which doctor should I contact first?
“This depends on several factors. For example, if it’s been many years since your transplant, you have no active transplant-related medical issues, and you have been seeing your primary care doctor for some time, it would be better to contact your primary care doctor first. When in doubt, you can contact whoever you are most comfortable with. Primary care doctors will usually talk to your transplant doctor to find out who should take care of your question or concern.”
Know your treatment history and share it
“You can make the transition smooth by knowing about your transplant treatments and potential complications. Share this information with your primary care doctor. Learn about your follow-up care after transplant. You may need more or different exams based on your experience, but guidelines are a starting point to help you talk with your primary doctor.”
I’ve already made the transition—and I still have concerns. What can I do?
“Transplant is a highly specialized treatment, and primary care doctors may not be familiar with caring for patients after transplant. Share your concerns with your primary care doctor and use the post-transplant guidelines to help you talk with your doctor. In my experience, most primary care doctors do not hesitate to contact the transplant doctor for help when needed.”
As you head back to your primary care doctor, remember: It’s okay to feel nervous—but you can help make the transition a smooth one by preparing ahead of time, communicating with your health care team, and advocating for yourself along the way.
See how others, like Elizabeth, are making the transition.
When Elizabeth made the transition to her primary care physician, she had some concerns.“I was frightened to give up the [transplant] team that helped me so much. But my transplant doctor said something to me before I left that gave me great comfort,” Learn what her doctor told her and watch the rest of Elizabeth’s story. [watch video]
If you’ve ever felt alone or like nobody understands what you’ve been through or have experienced changes in your roles, relationships, or physical abilities after transplant, you’re not alone. Both patients and caregivers often go through emotional and physical ups and downs that may impact quality of life (overall well being). Whether you’re experiencing the good or the not-so-good after transplant, have you thought about talking with someone who’s been through it? Ed knows firsthand how much it can help.
Ed had his ups and downs after having a transplant in 2011 for Acute myelogenous leukemia (AML).“Going through transplant and recovery can be tough,” he said. While doctors prepared him for what to expect, “It would have been helpful for me to talk with someone who had been through transplant, to learn more about it, to better prepare myself, to ask questions like “has this ever happened to you? What did you do?”
“It can be difficult to absorb and fully comprehend all the information you’re getting from your doctors,” Ed added, “Talking to someone who’s been through it is less stressful. It’s a conversation with plenty of opportunities to ask additional questions and get clarification.”
Today, Ed is a Peer Connect volunteer—someone transplant recipients and caregivers can turn to for advice or as a shoulder to lean on. “Talking with someone who has been through it can be really helpful. I think it’s important for patients and caregivers to know it’s alright to be afraid, scared and apprehensive about their situation, and that the emotions they are feeling are normal.”
The Peer Connect Program can put you in touch with trained volunteers—who are transplant recipients and caregivers—who are there to listen, answer your questions and share their own transplant experiences. “The program didn’t exist at the time I had my transplant, and I really wish it had,” said Ed.
Ed’s wife and caregiver Kate is also involved in the Peer Connect Program. “Because Ed and I lived near our transplant center, we were discharged to home just two weeks after the transplant, and made daily trips to the clinic,” Kate said, “Because there was no Peer Connect Program, we didn’t have the opportunity to talk to any other patients or caregivers until Ed was feeling well enough to attend some support groups.”
Ed and Kate found it helpful to hear what other patients and caregivers were experiencing, and what was normal. They also learned that they weren’t alone—and it was different than hearing it from a doctor.
Get practical advice and emotional support
Transplant patients and caregivers use the Peer Connect Program to find out how others have dealt with post-transplant issues like fatigue (tiredness), not feeling well, poor appetite, food not tasting good, and other side effects. They can also get encouragement and emotional support to help cope with quality of life changes. And while your medical team will always be your first source of information, talking to a peer can support you in other ways.
“Depending on individual situations after transplant, people may have continuing transplant-related issues and complications,” said Ed. “This can be hard emotionally. People want to know what it’s like, what recovery is like, what helped you and your family. Having gone through it myself, I can fully empathize.”
Peer volunteers benefit, too
“We were about a year after transplant when the Peer Connect Program began, and we were among the first to volunteer,” said Kate. “We really wanted to be able to offer that kind of support to others. If you’ll excuse the cliché, we feel honored to be able to walk along side other patients during their transplant journey.”
Fellow Peer Connect volunteer and transplant recipient Marty agrees. “I volunteered for the program because I like helping others. I understand the need to speak with someone who has gone through the experience. I feel a unique satisfaction in being able to do something that few people can do. It’s like throwing a life preserver to someone in open water. ”
Today, Ed describes his life as pretty much back to normal. “I’m able do most of the things I did before I was sick, and my medical issues now tend to be those of an active 70-year-old male. I think sharing my experience with others who are in an emotionally stressful situation can positively benefit them.”
Interested in Peer Connect?
Want to talk with someone who’s been there? Or are you interested in becoming a peer volunteer?
“When the doctors told us Ava had leukemia, my world came crashing down. Leukemia in itself is devastating, but then to hear that she had an extremely rare form with little research on it – that was hard,” said Esther, Ava’s mother.
A precocious, active youngster, Ava had battled serious allergies throughout her life. So when a skin infection on her leg prompted her parents to take her to the hospital one day, they assumed it was from eczema. The doctors put Ava on antibiotics and ran blood tests to make sure everything was fine. What they found was a heartbreaking diagnosis of Biphenotypic Leukemia, a mixture of both AML and ALL leukemia.
Doctors determined that Ava’s best chance for a cure is a bone marrow transplant. Unfortunately her younger sister Gwen was not a match. This is not uncommon. In fact, 70% of patients do not have a match in their family. Sibilings with the same parents have only a 1 in 4 chance of being a match.
Being half Korean and half Taiwanese, finding a perfect match will be a challenge for Ava. But instead of seeing the odds as a setback, the Lee’s see it as an opportunity to help bring attention to the need to add more Asians to Be The Match Registry® – and to educate about why race and ethnicity matter when it comes to bone marrow.
“People don’t realize the need for donors, and if they do, they often fear what a bone marrow transplant entails,” said Esther. “Signing up for the registry and donating marrow – this is not something to be scared of. This is a privilege people can take to help save a life – to be a hero.”
Rallying support for Team Ava Bright
The family, along with family and friends, have been actively recruiting more people of diverse ethnic backgrounds to join the registry. They’ve hosted bone marrow drives in Ava’s honor and are also participated in the Be The Match® Walk+Run in Chicago on April 12.
The Be The Match Walk+Run brings together communities to celebrate and transplant hope. Participants raise critical funds throughout the year to help patients with blood cancers take the next step toward a life-saving marrow transplant.
You have the power to give hope for a cure to Ava and other patients. Sign up for a Walk+Run near you.
Follow Ava’s story.