For more than 25 years, Be The Match has added volunteer marrow donors to the Be The Match Registry® to facilitate life-saving marrow transplants for patients with blood cancers like leukemia and lymphoma. More recently, we’ve worked with cord blood banks to expand the registry to include umbilical cord blood units that, like marrow, can save lives through transplantation. To accomplish our mission, we need your help to make sure federal lawmakers know how important it is to continue the C.W. Bill Young Cell Transplantation Program and the National Cord Blood Inventory, life-saving public health programs Be The Match operates.
The good news is that Congress has continually recognized the significant work of Be The Match by reauthorizing the programs we operate. These programs help maintain and expand our national marrow and cord blood registry, support research to improve patient outcomes, help patients navigate the health care system and more.
The Reauthorization Process
This September, Congress will decide whether or not to continue supporting the C.W. Bill Young Cell Transplantation Program and the National Cord Blood Inventory, which helps cord blood banks collect units for the national Be The Match Registry. Because Congress created the original authority for these programs, they must review it every five years to determine if it should be continued. This process is known as “reauthorization.”
Right now, legislation that would reauthorize the continuation of these programs and allow federal funding through 2020 is in the House of Representatives. We anticipate a similar bill will be introduced in the Senate as well.
How You Can Help
Be The Match needs advocates like you to help maintain support for these critical programs and to make sure that all Americans understand its role in saving lives.
Be the voice that saves a life. Join our advocacy network and learn how you can support programs like the C.W. Bill Young Cell Transplantation Program and other advocacy efforts in the future. Visit BeTheMatch.org/Advocacy today and get involved!
As told by Aaron, PBSC donor
“When I joined the Be The Match Registry® in 2008, I honestly never thought that I would be someone’s match. About 6 years later in 2014, I got a phone call and was told I was 1 of 3 possible matches for someone. It wasn’t until a couple of months later that I found out I was the best match for him.
There was never a doubt in my mind that I would donate. I didn’t know a lot about the recipient at the time, and I still don’t. I just knew he was in his late 30s, the illness he had and that he lived in Germany. But when I got the call, I started thinking about my own family. I was a teenager when my dad was in his late 30s. If the transplant patient had been my dad, I would have hoped that his match made the decision to donate and give him an opportunity for a future with his family.
It honestly took very little effort for me to donate peripheral blood stem cells (PBSCs), so I didn’t fully grasp the gravity of what this all meant until a couple months later when I went to a reception with other donors and recipients. I heard all of their stories, and I started thinking about how this guy in Germany needed a transplant, and I was the best match for him for a transplant that probably saved his life. That’s pretty incredible.
It’s been more than a year now since he had his transplant, and I still think about the recipient and wonder how he’s doing. Germany has a longer waiting period for communicating, so it will still be a while before we can get in touch if he’d like to. It would be pretty cool to meet him!
Even though I don’t know him and we may never meet, I’m pulling for him and I’m not the only one. I still have friends and family who ask me how the recipient is doing and tell me they think of him.
If I had to do it all over again, I absolutely would. I would do it every week if I needed to. I might not know the recipient, but it feels good to know I helped him.”
If you haven’t communicated with your donor but would like to do so, talk to the staff at your transplant center. They can help you determine when or if you can get in touch with your donor. Learn more about having contact with your donor.
You may have heard about advance directives (also called a living will or power of attorney for health care) when you were going through the transplant process. You may have even created one. But did you know that it’s just as important for you to have an advance directive now as it was before your transplant? And that if you already have an advance directive, you should revisit it and update it from time to time?
The importance of an advance directive
“There are many misconceptions about advance directives, what they are and who should have one,” says Jill Randall, MSW, LICSW, a Be The Match® patient services coordinator. “It’s a good idea for every adult to have an advance directive for health care. They’re not just for people who have a life-threatening condition or for older adults.”
“Anyone could get in an accident at any time and need someone to make health care decisions for them,” she adds. “That’s why it’s so important for adults to have an advance directive.”
So what is an advance directive, and why should you look at it again if you already have one?
An advance directive is a legal, written document that has 2 parts:
- A living will
- A durable power of attorney for health care
The living will allows you to write down what your wishes are for your health care, including what kind of care you would or would not want to have, if you are unable to speak for yourself.
“A living will is not just a statement about when life support should be removed. That’s a common misconception. It also helps your doctors and the person you designate to make medical decisions for you when can’t speak for yourself, even temporarily,” Jill says.
Naming someone who can act on your behalf to make medical decisions for you is the durable power of attorney for health care. This person might also be called a health care agent, proxy or surrogate.
Have a conversation about your wishes
Remember, developing your advance directive isn’t enough. The conversations you have with your loved ones and health care team are just as important.
“The advance directive doesn’t help if no one knows about it. And if it’s needed, your loved ones may be left wondering what you would want. That can add a lot of stress to an already stressful situation,” Jill says.
“The conversations may be difficult, but they’re needed,” she adds. “Many people have a sense of relief that if they need to step in and make some decisions for their loved one, they know what their loved one would want. It’s reassuring for everyone.”
Debi, a transplant recipient, says, “When I got sick, I was so scared I didn’t sleep well for a long time. I looked at my will again, including my advance directive, and made some changes. Then, I sat down with my sons and my husband and shared my wishes with them. Knowing they understood my wishes relieved some stress during a very difficult time.”
Revisit your advance directive
Once you’ve developed your advance directive, it is important to go back and look at it occasionally to make sure that the wishes you have expressed have not changed.
“Things change for people over time. Your perspective after transplant may have changed. Or your life circumstances may have changed. Maybe the person you chose as your power of attorney for health care is no longer available, or maybe there is someone else you prefer now,” Jill says. “Even if you don’t make any changes, it’s a good idea to look at it from time to time to make sure everything is current. You can change your advance directive at any time and for any reason.”
If you do make changes, be sure to have conversations with your loved ones and health care team again so they know how your wishes have changed, and give a new copy of your advance directive to each. Your health care team will put the new document into your medical record.
If you haven’t created an advance directive, your health care team can provide you with the documents you need to get started. They can also help if you have questions about how to update your advance directive.
The following organizations also provide helpful information on advance directives:
The time commitment for the donation process is generally 20-30 hours of your time during a four- to six-week period.
2. Will I get paid to donate? No. Donors are never paid to donate, but all donation-related expenses are covered. Some companies and even states have donor leave policies or law in place. Find out more about your state’s policies.
3. Will donation hurt? Everyone has a different experience when it comes to feeling pain. Some donors say they felt nothing, while others reported feeling more pain. Hear directly from donors —watch these videos.
Sean is no stranger to giving. As the founder and director of a non-profit organization focused on helping young adults, Sean’s generosity extends beyond his community. In 2012, Sean joined the Be The Match Registry® hoping to match a coworker in need of a marrow transplant.
Although he was not a match for his coworker, Sean remained inspired by the thought of helping others. He didn’t hesitate when asked to donate marrow two years later to an eight-year old girl – a stranger.
Despite being supportive of his decision to donate, Sean’s family was hesitant: they were concerned the procedure would be very painful. But to Sean, the potential pain was not an issue. “Can you imagine what this little girl [patient] and her family are going through every day? If donation hurts, that’s fine. Hurting is nothing.”
Sean’s positive attitude accompanied him on donation day, too. He describes the donation process as “simple,” and felt the most difficult part of the experience was waking up early to arrive at the hospital by 4:45 a.m.
After the procedure, Sean found it slightly uncomfortable to sit down and experienced a small stomachache and headache from the anesthetic. But this didn’t stop Sean from donating a second time.
Ready to Help a Second Time
Some transplant recipients may need additional blood, marrow, or peripheral blood stem cell (PBSC) donations to boost his or her recovery. In these cases, donors may be asked to consider making an additional donation.
While being asked to donate a second time for the same patient is uncommon, Sean was one of the three percent of donors that encountered this request. So, four months later, when Sean was asked to donate PBSC (the other method of donation) to the same young patient, he didn’t hesitate.
It’s important to remember that every donor’s experience is different. Some donors, like Sean, say the experience is less painful than they expected, while some report more pain and others report no pain at all.
Sean’s Commitment Still Holds Strong
After recovery, Sean has continued to give his time to Be The Match®. He participated in the 2014 Columbus Walk+Run and hosted a donor recruitment event, adding 40 people to the Be The Match Registry®. He plans to host several online events to encourage more people to register.
“Donation is about being able to help someone through a selfless act,” Sean said. “It helps the transplant recipient have a fighting chance, and to continue to have time with their family and friends.”
Sadly, this April, Sean learned that the little girl he donated to passed away. “Still,” he says, “sharing my experience is important to me, with the hope that it will inspire even one person to join the registry.”
While prepping for his final high school exams, Sheldon began to feel ill. This optimistic teen from Durham, N.C., thought his lingering stomach ailments and prolonged fatigue would pass after his workload lessened and he got more sleep. But when Sheldon collapsed on his way to an end-of-year ceremony, he went to the hospital.
After several tests, doctors determined Sheldon was battling severe aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), two rare bone marrow failure disorders. His only hope for a cure is a bone marrow transplant—and his doctors have been searching for a matched donor for over two years.
Sheldon is searching too—not only for himself, but for others who also need matching bone marrow donors, particularly African Americans. Sheldon knows that 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. The reason for this is because within this population, there is a high degree of diversity of HLA types (what is used to match patients) as well as an overall lower availability rate (willingness to move forward) when called as a potential match. More African American donors are urgently needed to save more lives.
That’s why Sheldon is sharing his story and spreading the word in every capacity he can. Not only is he acting president of the Be The Match® On Campus chapter at his school, North Carolina Central University, but he is also actively adding new potential bone marrow donors to the Be The Match Registry®.
Since his diagnosis, Sheldon has been hosting college-campus bone marrow donor registry drives in conjunction with Be The Match and DoSomething.org’s Give A Spit about Cancer campaign. In 2013 alone, more than 4,000 people joined the Be The Match Registry as potential bone marrow donors during “Swab For Sheldon” donor registry drives.
This July, which is African American Bone Marrow Awareness Month, Sheldon and Be The Match are issuing you a challenge: Step up and help save more lives. Find out how you can be the cure at BeTheMatchOnCampus.org. As Sheldon says, “Keep the hope alive.”
Jasmine was just 16-years-old when she came face-to-face with the harsh reality of blood disease. After a lengthy battle with sickle cell anemia, Jasmine’s best friend, Kiki, passed away. For some, such an experience would be defeating, leaving a person hopeless. For Jasmine, the death of her best friend filled her with a fuel to help others.
To call Jasmine an incredible young woman would be an understatement. Whether she is volunteering with her church, winning basketball awards (despite her small 5-foot-3 frame) or preparing for her next journey at Officer Candidate School for the U.S. Marine Corps, she lives a truly inspiring life.
But perhaps the most inspiring thing about Jasmine is that, even years after the passing of her best friend, she embraced the opportunity to help a little girl just like Kiki. At age 18, she joined the Be The Match Registry® as a potential bone marrow donor with a simple swab of the cheek.
A couple years later she got the call that she was a matching donor for a patient. Jasmine was amazed and newly energized as a potential bone marrow donor. “Initially I was shocked. I thought to myself, ‘Is this really happening?’” She quickly called back and said, “I’m doing this! If I can donate, then I’m doing it.”
Soon after, Jasmine was confirmed as the best matching donor for her recipient. She didn’t hesitate when asked whether she would proceed with the donation. In August 2014, Jasmine followed through with her commitment.
Her recipient, a 9-year-old girl with sickle cell anemia, was only a year older than Jasmine was when she first met her friend Kiki. Because of this, and because the little girl shared Kiki’s disease, Jasmine’s donation felt especially personal.
Of her recipient, Jasmine remarked, “she is probably one of the strongest people I don’t know. She changed my life and I haven’t even met her. To go through something so serious, at such a young age, is amazing.”
If both parties agree and the transplant center allows, a donor and recipient can meet one another, but must wait one year after transplant. Jasmine is hopeful she will have the opportunity to meet her young recipient someday.
July is African American Bone Marrow Awareness Month, and Jasmine hopes her story will inspire more young African Americans to join the Be The Match Registry and stay committed to donating to any patient in need.
“If we have the ability to help someone, it is our responsibility,” Jasmine said. “If you’re healthy, then this is a very easy process you should want to do. It hurts a little bit, but think about the result: you’re giving somebody another chance at life.”
Did you know that anyone at any age has the potential to receive a marrow transplant if needed? This hasn’t always been the case, however. Several years ago, transplant doctors were wary about administering marrow transplants for patients over age 50. That changed when research on the treatment of blood cancers and diseases showed that a patient’s overall medical condition is more important than age alone.
In order for a patient to receive a marrow transplant, the diseased marrow in their body must first be completely eliminated using chemotherapy and/or radiation. Then, the recipient’s marrow is replaced with a donor’s healthy marrow. Unfortunately, due to other existing medical conditions, using high doses of chemotherapy to eliminate the diseased marrow is often hard for older patients to endure.
Despite these findings, there are still preconceived notions around marrow transplants and age. For instance, PBSC transplant patient Bob, diagnosed with Acute Myeloid Leukemia (AML) at age 57 didn’t believe transplant was an option for him. Before receiving a PBSC transplant in 2005, Bob believed he would have better success with other treatment options, due to his age.
“I had read an article, years and years ago, 20 years before this happened, back in a waiting room somewhere, and it put this image in mind that transplants should be avoided at all costs. So I wasn’t thrilled with the idea but said if this is the only way, go ahead,” said Bob.
“I was happy to be in remission and have that as an option but I should have been more aware since years ago when I read the article that technology has come a long way and is much better than it [was] back then.”
During this decade, the portion of transplant recipients older than 60 has more than doubled. Because many researchers and doctors have dedicated time to advancing treatments for older patients, this group of patients continues to be the fastest growing age group of transplant recipients. In 2014, nearly 47 percent of Be The Match® facilitated transplants were for this group of patients.
Through these medical advances, recent research has shown that age should not be a barrier to transplant. Read more about additional life-saving advances in marrow transplant research.
Being home definitely beats being in the hospital, but until a marrow donor is found for three-year-old Aksel, home has become a bubble of isolation. Aksel is clearly a fighter having already beat seizures, organ failure and internal bleeding. But he could use some re-enforcements right about now, and there’s a way you can help instantly put a smile on Aksel’s face.
Please help us #BurstAkselsBubble by posting photos or videos via Facebook, Twitter, or Instagram playing like a 3-year-old and wishing him well using the hashtag.
Aksel would cherish playing with a world of new buddies, if only virtually, for now.
What’s fun to Aksel? He loves dancing, singing and the rain. Sing him a goofy song or show him your dance moves. He’s partial to Pharrell Williams’ “Happy,” Madagascar’s “I like to Move It, Move It” and “Gangnam Style.” Stomp in some rain puddles for him – the messier the better. His dad works with Formula One racing and Aksel loves cars. Put on a Hot Wheels® race for him.
Does your dog do tricks? Put on a show for Aksel (and Onyx, too). Build a secret fort and invite him in. Rally a convoy of trikes and parade around your block wishing Aksel well. Create a special message for him with sidewalk chalk or finger paint. He misses the swimming pool – the tub is as close as he gets now – so do some goofy dives for him.
“If the public would do this for Aksel, especially other children, it would mean so much to us,” said Carla, Aksel’s mother. “You’d be helping my little boy forget that his life right now is only ‘sort of normal.’ You’d be adding more smiles to his day.”
Aksel has a great smile so let’s put more on his face by showing him great #BurstAkselsBubble photos!
Single mother knows that, in the face of cancer, “The bills don’t stop.”
Born prematurely, six-year-old Austin has spent most of his life in and out of the hospital. When his struggles worsened, blood work revealed a devastating diagnoses—monosomy 7, a rare form a pre-leukemia.
Nikki, Austin’s mother, was devastated and she immediately wanted to know about treatment options. Living in a rural community, they drove four hours from home, to Duke University Medical Center, and learned that Austin’s only hope was a marrow transplant.
Nikki had insurance, but it didn’t cover the search for a marrow donor—essential to saving Austin’s life. As a single mom, the financial burden seemed insurmountable, but there was hope. She was informed about Be The Match Patient Assistance and, thanks to generous financial contributors like you, Be The Match was able to cover the cost of Austin’s search for a marrow donor. Thankfully, an umbilical cord blood match was quickly found.
Gift of Life
Today, Austin’s life is forever changed. Previously a very sick little boy, he didn’t have the strength to learn and play. Now he is retaining weight, his language skills exploded and he is healthy enough go to school. “Austin’s marrow transplant has changed our life and given us hope for his future,” says Nikki.
Nikki is forever grateful to the mother who donated her baby’s umbilical cord blood. “She gave my child life. Someone who would do this for a stranger is an angel.”
The Bills Don’t Stop
Nikki is equally grateful for the financial assistance. “I am a single mom and I was unable work during the time we were in the hospital. The bills don’t stop just because your child is sick. I worried about everything—how will I pay the mortgage, will we have a home when we leave hospital, will we be able to afford food? The patient assistance funds helped with these burdens and allowed me focus on what was most important – Austin’s health.”
How you can help
No qualifying patient has ever been turned away, but requests for help continue to escalate. Over the past five years, the number of families who need help has more than doubled. On average, families who apply for patient assistance funds struggle with expenses that exceed their income by more than $1,600 a month.
During the month of June, John and Caryn Camiolo want to help patients like Austin—and mothers like Nikki—pay for some of the uninsured transplant costs. They have given $100,000 for Be The Match to use as a challenge match, and are challenging our supporters to raise an additional $100,000 for Patient Assistance. Your gift will be matched, dollar-for-dollar, and if it’s received by June 30, will have twice the impact in bringing assistance—and hope—to patients and families.
Please send your gift—of any amount—to Be The Match today and double your impact!
To those who pay it forward to help families like hers Nikki says, “There are no words to thank you enough. Gifts to Be The Match mean life or death for families like mine. We are forever grateful and forever blessed by your financial support.”