Donation Fast Facts – Three Questions You Might Ask

Posted July 31st, 2015 by admin and filed in News

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Jeff with caption1. How much time will donating take?

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. 

Without Hesitation Sean Steps Up – Twice!

Posted July 28th, 2015 by admin and filed in News

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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 it hurts, that’s fine. Hurting is nothing.”

Donation Day

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 the 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, whileSean with caption 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.”

Searching for His Life-Saving Match

Posted July 7th, 2015 by admin and filed in Patient Stories

Sheldon Mba Head ShotWhile 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.”

Honoring the Memory of Her Best Friend

Posted July 1st, 2015 by admin and filed in News

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.

Jasmine uncroppedBut 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.”

A New Chance at Life for Patients Over 50

Posted June 26th, 2015 by admin and filed in News

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.

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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.

Patient over 50

“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.

#BurstAkselsBubble

Posted June 10th, 2015 by admin and filed in News

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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!

 

Austin’s Story

Posted May 29th, 2015 by admin and filed in News

Your matched gift will help children and families get the support and assistance they need! 

Austin

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.”

Give now and double your gift>

Donation Fast Facts

Posted May 28th, 2015 by admin and filed in News

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If you’re lucky enough to be called as a potential match for a patient in need of a marrow transplant, you’ll likely have some questions. To help prepare you for this potential opportunity, check out these Q and As about getting the call.

When will I be contacted as a potential match for a patient?

You could be contacted today, next year or you may never be contacted. One in 40 registry members will be identified as a potential match for a patient and called upon for additional testing. On average, one in 540 members will go on to donate.

How will I be contacted?

Be The Match will reach out to you using a variety of methods to let you know you’ve been identified as a potential match. You could receive a letter, email, phone call or text. It’s important to respond right away, as time is of the essence. Please keep your contact information updated so we can find you quickly.

What if I have questions when I’m contacted?

  • We’re here to support you and will address any and all questions or concerns. But again, the most important thing is to call us back if you’ve been contacted.

If you’re the best match for the patient, the typical time commitment for the donation process is 20-30 hours over a 4-6 week period. Donors never pay to donate and are not paid for donating.

To learn more about the donation process, check out this interactive timeline.

 

 

Medicare Coverage for Sickle Cell Disease

Posted May 21st, 2015 by admin and filed in News

Early in 2015, the National Marrow Donor Program® (NMDP)/Be The Match® and the American Society for Blood and Marrow Transplantation (ASBMT) submitted a formal request to the Centers for Medicare and Medicaid Services (CMS) for expansion of the current list of diseases for which Hematopoietic Cell Transplant (HCT, also known as blood and marrow transplant) is expressly noted as covered and reimbursable. Several diseases were on this request, including Sickle Cell Disease, Myelofibrosis, Lymphoma and Multiple Myeloma.

The NMDP and ASBMT submitted a coverage request for these diseases to increase access to care. Medicare does not indicate that these diseases are either covered or non-covered and this lack of clear coverage puts a patient, and the hospital treating him or her, at severe financial risk if Medicare denies the reimbursement claim after the procedure is complete.

While Medicare primarily serves people age 65 years and older, about 15% of those covered are younger adults who have a disabling illness, such as sickle cell disease. In addition, other payers and insurance plans, including state Medicaid programs, often match their coverage to Medicare.

CMS has agreed to open a National Coverage Analysis (NCA) for two of these diseases now – Sickle Cell Disease and Myelofibrosis. There is a public comment period open from now until May 30, 2015.

How you can help: Please visit the Medicare website on this topic, read the materials and follow the instructions on how to submit a comment. Comments can be simple and to the point; complexity is not required. Please note – the quality of comments is more important than sheer quantity. 

Suggested content for comments:

Identify what type of stakeholder you are: patient, caregiver, advocate, etc.

Identify if your comment is in regards to transplant for Sickle Cell Disease or Myelofibrosis, or both.

Share your story: Tell CMS about your experience with transplant and sickle cell disease. If you experienced a lack of insurance coverage, explain the barrier that created and how it may have impacted you personally.

Comments are due by May 30, 2015. These comments are extremely important to the process and are taken seriously by the Medicare coverage team. Your input will be crucial to the success of this initiative to make transplant accessible to more Medicare beneficiaries.

Please feel free to contact Alicia Silver with questions regarding the National Coverage Analysis: alicia.silver@nmdp.org. For other questions regarding our patient resources and services you can call 1 (888) 999-6743 or email us at patientinfo@nmdp.org

Thank you for your help!

Are you Aksel’s cure? Available for a virtual playdate?

Posted May 20th, 2015 by admin and filed in News

Lonely for playmates, Aksel, 3, waits in isolation for marrow donor

Most parents treasure the idea that their child is one-of-a-kind. Aksel’s mom and dad, however, desperately hope their little boy is not.

Like any 3-year-old, Aksel has energy to burn. But for this toddler, there’s no swinging from the monkey bars with other kids. No trips to the zoo. No pre-school classmates to play superheroes or dig in the sandbox with. No buddies coming over to ride trikes and toss back a juice box or two.

5. Campaign Pic

Aksel lives in near seclusion, 90 percent quarantined at his Miami home because of a life-threatening blood disease that has corrupted his immune system. Exposure to even minor viruses or bacterial infections could likely reactivate his disease and prove fatal.

There’s a cure. But it will take a stranger to step forward.

While a marrow transplant can cure Aksel, doctors so far can’t find a matching marrow donor. Turns out few registered marrow donors anywhere on the planet represent the genetic combination – Scandinavian and South American – that is Aksel.

No one in his family is a marrow match. There’s no match on Be The Match Registry®, the U.S. listing of volunteer marrow donors, and international searches haven’t been encouraging.

Aksel’s need for a marrow donor is critical. So his parents, Fredrik and Carla, are urgently searching the world over to find someone to save their “little Viking,” as they call him.

There’s power in your ancestry that makes your marrow life-saving and Aksel’s family is hoping you’ll use it. If you’re between 18 and 44 – especially if you have Scandinavian and/or South American heritage – please visit http://join.BeTheMatch.org/SaveAksel and join the marrow registry. You could be the cure for Aksel or patients like him.

Complete the online health form and you’ll receive a swab kit in the mail. Swab the inside of your cheeks and mail it back in the postage-paid envelope. It’s that easy.

Every year, 14,000 patients in the U.S. with leukemia, sickle cell and other blood diseases search for a marrow donor to save their lives. Patients are more likely to match someone who shares their heritage, but family isn’t enough. Most of us (70 percent) won’t have a match in the family. Patients need their communities, indeed the world, to step up.

Aksel’s world

Typically healthy, Aksel began coming down with one persistent bug after another in November 2014. Then in December, he inexplicably suffered a seizure and organ failure. A bizarre convergence of three viruses had triggered hemophagocytic lymphohistiocytosis or HLH – the blood disease that is now threatening his life.

Aksel spent hours in surgery and nearly two weeks in the pediatric intensive care unit at Miami Children’s Hospital. Doctors didn’t expect him to survive, but Fredrik and Carla’s “little Viking” fought his way back home.

Home definitely beats a hospital room, but until a marrow donor is found, home has become a necessary bubble of isolation. And, good luck explaining the “necessary” part to a 3-year-old. While upbeat and positive, Aksel is lonely – especially for other children to play with.

His typical day includes bits of normal life. But even those bits come with restrictions.

For instance, Aksel goes on walks in the neighborhood to get fresh air and see new faces. While he can say ‘hello’ to people, he must keep his distance and have no contact. His parents learned the hard way to bypass walking by the park, outdoor birthday parties or blocks where lots of children play. If Aksel sees kids playing, he cries and cries – and pleads to join them. “It’s so heartbreaking,” said Carla.

The complex where he lives has an indoor and outdoor park, but Aksel can’t play when other kids are there. He can only play by himself and only if the equipment has been thoroughly cleaned and disinfected.

There are a few children Aksel may play with one-on-one, but only under the strictest of conditions. First, the child must be screened for 72 hours before any visit to ensure he or she has no sign of illness. If cleared, the playdate must wear very clean socks and leave their shoes outside. Once in the house, he or she must visit the “sterile bar” to get disinfected and fitted with a mask. Even with all that, the playdates are short and contact is limited.

1. Summer 2014- Before HLHThank goodness for Onyx, Aksel’s trusted furry friend. This Shih Tzu keeps Aksel company, watches over him without getting too close, resists the urge to lick and even tolerates getting her paws and snout disinfected daily. They are inseparable.

“We try to make his everyday life ‘sort of normal’ – as much as possible, while at the same time keeping him safe. He doesn’t understand and it feels awful as a parent. But we almost lost him. Catching a cold could bring us right back to the ICU,” said Carla.

Burst Aksel’s Bubble

Clearly Aksel is a fighter. He’s already beat seizures, organ failure and internal bleeding. But he could use some re-enforcements right about now. If you are unable to join the marrow registry, there’s another way to help – and it would instantly put a smile on Aksel’s face.

Child or adult, please help us #BurstAkselsBubble.  Send him a photo or video via Facebook, Twitter, or Instagram playing like a 3-year-old and wishing him well.

Aksel would cherish playing with a world of new buddies, if only virtually, for now.

6. Finally Home with Mama & Papa

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,” Carla said. “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.”

And, by the way, Aksel has a great smile.