September is National Awareness Month for Blood Cancers like leukemia, lymphoma and sickle cell anemia. One of the most successful medical treatments for these types of cancers is a transplant. Bone marrow and stem cell transplants save thousands of lives each year. A transplant replaces a patient's unhealthy cells with those of a healthy donor. This month and throughout the year, transplant recipients and national and local celebrities — some of who are donors, transplant recipients or cancer survivors themselves, are combating blood cancer by encouraging the public to join a team that saves thousands of lives annually, whose more than 11 million members are registered on the National Marrow Donor Program, or the “Be the Match” Registry. In 1987, “Be the Match”, then known as the National Marrow Donor Program, started when the first 10,000 volunteers signed up as potential donors to patients suffering from blood cancers by agreeing to donate their healthy cells during a future transplant procedure if selected.
Over the years, “Be the Match” has helped the lives of numerous patients in over 61,000 transplant cases. Transplants can only be scheduled, however, when a donor's tissue type matches that of the cancer patient's. Since “Be the Match” statistics show that the best genetic matches come from a patient's relatives first (followed by persons sharing the same ethnicity) family is the first place most doctors look. However, interestingly, though families carry the best marrow matches when found, finding a correlation may often be difficult; and, national marrow statistics show that 70 percent of transplant candidates end up relying on the national registry for a matching donor.
North Texas “Be the Match” Community Engagement Representative Clifford Ackerman is all too familiar with the struggle to find a donor. Ackerman, a cancer survivor, was diagnosed with Stage 4 Non-Hodgkins lymphoma in 1998. After enduring more than two years of cancer treatment, he was told he needed a transplant. Experts tried first to find a match by testing his three siblings. That was unsuccessful. Eventually, however, “Be the Match” registry, then located at Baylor Hospital, did match him to a donor. Now Ackerman tells his story to audiences at donor drives across the country, offering living proof of the effectiveness of bone marrow and stem cell transplants, and telling the importance of registering for “Be the Match.” Ackerman said, “I was blessed to have a transplant.” After the success of the transplant, Ackerman went back to school and began volunteering at hospitals, helping with clinical trials and consulting patients and their families. Ackerman volunteered for four years at the same Baylor Hospital “Be the Match” facility responsible for finding him a donor, before he accepted a full-time position with them. Ackerman has worked for “Be the Match” for more than 10 years now, educating crowds of communities face-to-face about the vitality of either becoming a marrow donor or supporting the cause.
The moving variables involved in the donor search mean that for marrow registry champions and their partners, raising the number of donors eligible to participate in successful transplants is often a numbers game. For example, according to bethematch.org, of the thousands who sign up to donate, only about one of 500 members will actually go on to donate. Moreover, those chosen may not be contacted for years; and, if called (since donating is voluntary) have the choice of whether to undergo the transplant as originally agreed, or to opt out of it.
Complicating the donor search even more are factors like age and race. Although help from people of all ages is welcomed from the registry, records show the cells of 18-44 year old donors yield the highest rate of transplant success. Thus, they are the group most targeted. Additionally, fewer minority donors are registered than caucasians. “Be the Match” statistics show that while white donors make up over 65 percent of the national registry, Hispanics comprise only 10 percent of donors, with African-Americans and Asians represented at 7 percent each, Multi-Racial donors comprising 4 percent, Native American/Alaskan donors at 1 percent and Native Hawaiians/Pacific Islanders making up 0.2 percent of all “Be the Match” donors. Those shortages make the search more difficult for doctors seeking matches for minority patients; because, after family, the highest bone marrow matches occur among members of the same ethnicity. Thus, for “Be the Match” and partner organizations racing diligently to increase minority member numbers and public awareness on the national registry, the fight is on.
Last weekend, Ackerman took his message on the road to Arlington for “Belize Day” in support of “Regina”, an African-American patient battling T-Cell lymphoma. “Be the Match” registered potential donors from 2-6 p.m.at the event. According to Ackerman, “Be the Match” has been extremely busy during this Blood Cancer Awareness Month, as they are every month, presenting at events like college tours and donor drives. Ackerman detailed the organization's ambitious public relations campaign which includes in-person, online, and media outreach through channels like YouTube, radio and TV — often in conjunction with hospitals and other partner organizations.
The shortage of minority donors has driven “Be The Match” and Children's Medical Center of Dallas to launch nationwide YouTube and TV donor appeals for African-American children like 6-year old Joshua Biyoyouwei, who suffers from sickle cell anemia and 15-year old Malena Brown, daughter of former NFL player and current Dallas Cowboys coach, Gary Brown, who suffers from leukemia. Finding the donor matches that yield successful transplants for these child patients will save them from a life of continual, mandatory blood transfusions. Malena, whose biracial heritage makes finding a donor match even more challenging, according to “Be the Match” findings, made TV news after being diagnosed last year. Joshua, whose, disease is the result of a stroke suffered as an infant that left him wheelchair-bound, earned national TV fame after a “Be the Match” YouTube donor appeal was spotlighted by Good Morning America host, Robin Roberts — herself a blood cancer survivor who received a successful bone marrow transplant from her sister, who was a match.
Besides raising the consciousness of national celebrities, the shortage of registered, potential donors especially among minorities, is also leading regional celebrities like Dallas comedian and former K-104 D.J, K.C. Mack — who takes takes his comedy on the road to Killeen, Texas September 20 — to champion the cause. During a donor drive at his college 14 years ago, Mack answered the call to join the donor registry on a whim. That whim would later lead to answer a series of wake-up calls. “Little did I know back then,” Mack said, “that signing up to be a donor years earlier, which gave me a great feeling and a T-Shirt, would lead to me being asked to save a life.” In 2011 Mack received a phone call from the National Marrow Registry (“Be the Match”) Program, informing him that he was a partial match for a 7-year old girl with leukemia and inquiring if he still wanted to donate. “I said I did,” stated Mack, “I have a daughter about the same age and I would hope if she were in the same situation, no person would ever hesitate to help.” Mack said he knew the situation must be desperate if doctors were willing to gamble on a transplant with him being, “only a partial match,” so he prepped for the transplant. However, Mack never actually got the chance to go through with it, because, as he stated, “Within a week of the procedure they found a donor who was a full match.”
The fact that doctors were so desperate for a donor that they would “gamble” Mack's partially-matched tissue for a transplant, roused Mack's curiosity. He did his own research and was shocked to find how under-represented minorities were on the national registry. He was especially disturbed to discover that groups like African-Americans can be even more difficult to match because of their racial diversity. The shortage of registered donors is so vital that according to news sites like blackbonemarrow.com, in 2009 African-American community organizers were successful in pushing Congress to make July Bone Marrow Awareness Month. Resolution of the special month led to a coalition between “Be the Match” and the Congressional Black Caucus Foundation, and the involvement of stars like rapper, Nelly and singer T-Boz. After learning the depth of minority marrow donor shortages, Mack founded and became CEO of Funny Bone Marrow Foundation, a non-profit organization seeking to raise the number of potential donors among minorities.
The Funny Bone Marrow Foundation team consists of comedians touring the nation conducting, “Laughing for Lives,” donor drives to raise awareness and minority membership to the “Be the Match” registry. Mack said he purposely started the corporation during African-American Bone Marrow Awareness month last July. The organization has registered 70 donors since its inception. The organization's website, funnybonemarrow.org, captures the framework of the donor drives as, “Stand-up comedians standing up for a cause. Telling jokes and raising hope one laugh at a time.” Explaining further, Mack said, “We educate the public by visiting churches, colleges, and community events.” Using scriptures like, “Light in a messenger's eyes brings joy to the heart, and good news gives health to the bones” (Prov. 15:30), Mack said the drives also allow him to, “combine my career with my cause.” He elaborated, “We don't want to just make them laugh, we want to make a difference.” Admission to donor drives is free and as Mack says, the only cost is, “getting swabbed up,” a reference to the first step in registering, which involves submitting cheek cell saliva from a cotton swab. In fact, the team wears T-shirts that reiterate the end goal on the back, “All Swab'd up.”
Mack's team was able to get eight new potential donors, “all swabbed up,” at its most recent donor drive last month for Dallas Parks and Recreation's “Smooth Jazz and Soul in the Park” at the Martin Luther King Jr. Center, August 22. Parks and Recreation Coordinator Debra Turner said the event's purpose was to provide, “something for kids and their parents after a long, hard summer. We not only wanted to have entertainment, but education as well.” The event which featured spoken word poetry and legendary performances by Herbie Johnson's Jazz Band also heavily emphasized financial and physical health. Companies like Capital One, WellCare, and the Mayor's Youth Fitness Initiative were on-hand with interactive tents for adults and children. Turner said Funny Bone Marrow Foundation messages educate the community about a less publicized subject that is life-threatening: “I thought it was interesting to get people talking about something new that they may not always hear about. In our community we hear a lot about diseases like diabetes but cancer and other diseases that may require transplants are often lost. A lot of people think it will never happen to them or to someone in their family. So, I thought it was interesting to get people talking about something new that they may not always hear about.”
For all the complexity of donor matching, “Be the Match” extensive campaign efforts seem to be paying off. According to organization statistics, nearly, “539,000 new potential donors joined in 2013, of which 44 percent were racially and ethnically diverse.” Ackerman reported that the rising donor numbers are also due to better overall education about transplants in general. He also touted information from the recent high-profile cases of successful transplants that have worked to better educating the public about something that people in, “prior generations may have considered taboo,” because of misconceptions about transplants being more complex and involved medically than the outpatient procedures that they really are. Ackerman also pointed out that many young donors are attributing their response to donor drives to a sense that it is their philanthropic duty.
Ackerman explained that registering for “Be the Match” is simple. Volunteers who want to register to become donors can sign-up online or in-person by completing a consent form and submitting a cheek cell sample of saliva from a cotton swab. Anyone interested in finding out more about “Be the Match” can go to the bethematch.org site. Ackerman emphasized that although the registry seeks healthy 18-44 year olds to be potential donors, “We want everyone to know there is a way they can help. You don't have to be a donor. You can volunteer to do a lot of things, like hold a fund drive,” or help in outreach or in a number of ways.” Ackerman said people can also help by donating funds, which helps patients not otherwise able to afford a transplant. To join directly with Cliff Ackerman and the North Texas team of “Be the Match,” interested persons can go here.