Bob Falkenberg, a 13-year leukemia survivor, is just one example of a transplant recipient that Be the Match (BTM) has been able to treat and save by connecting him with a blood marrow donor. But while Falkenberg is a face of success in matching patients with a donor, the 12,000 patients diagnosed with life-threatening blood cancers or other blood cell diseases each year are not always as easily treated, especially with financial barriers and a disparity in match rates for nonwhite patients.
Just two years after his transplant, and with a push from a 100-mile bike ride challenge from his friend, Falkenberg has been biking to raise money and awareness for the need for transplant donors for the past 11 years. He and his team of nine riders took to the Island July 20 to continue this support for Be the Match, part of their monthlong East Coast ride event, Tour De TC. This annual bike ride raises critical funds for Be the Match, with this year’s ride aimed at raising enough funds to financially support 25 families in need of treatment.
In his past years of biking for Be tThe Match, Falkenberg has embarked on rides from Boston to Key West, Vancouver to San Francisco, and Vancouver to Florida. His hope is to hit all 50 states with future rides. For the second half of this year’s July tour, the crew has already gone from Boston to the Cape and Martha’s Vineyard, but will continue on via ferry to Rhode Island and Connecticut. From there, the crew will ferry to the east end of Long Island and into New York City to meet people from the transplant center there. Finally, the riders will head to the children’s hospital in Philadelphia.
In past years, the rides have been more family-and-friends-oriented, according to Falkenberg. But this year, he said that the rides have been more open to participation. From this, he added, they have gotten a larger response, and have already raised $100,000 for this year, three times as much as last year’s raised funds. This is just the start, as he expects they will double all raised funds from this year next year.
Funds raised go toward adding more donors to the Be the Match registry, research to ease the safety of transplant procedures, as well as financial assistance for families and patients in need of transplants and in post-transplant recovery. For adding donors, there is a cost to do the human leukocyte antigen (HLA) tests in order to add donors to the registry, and match them to patients. Funds for researching the transplant procedures include identifying and preventing issues that can impact chance of survival, which has increased from 30 percent to closer to 50 percent in the past 13 years, according to Falkenberg. For many people, the journey of treatment and recovery can even be such a financial toll it can prevent patients from moving forward with potentially lifesaving procedures if careers are put on hold, decreasing household income, says BTM in an information sheet.
“Leukemia is the No. 1 childhood cancer, so a lot of this is for kids. When the parents travel, they have to stay there for a long time sometimes,” Falkenberg says, which takes time away from work and puts financial strain on family support. There are financial grants through BTM that increase this family and patient support while covering costs that insurance will not.
Money is not the only thing that decreases the success of patient survival, as there has grown to be a disparity in the diversity of donors. According to BTM, out of almost 300,000 potential U.S. donors added to the registry last year, only 31 percent were ethnically diverse. Falkenberg commented on this issue, saying, “There’s about 20 million people on the registry, but if you’re Black, you only have about a 29 percent chance right now of finding a single donor on the registry, because there just aren’t enough Black donors, and it’s tied to your DNA and ethnicity.” Falkenberg also said that there is a similar struggle for Asian or Pacific Islander patients, Hispanic or Latino patients, and Native American patients, though not quite as bad as the odds for Black or African American patients.
Elle Crofton, a first-year rider diagnosed with a blood cancer nine years ago, works as an advocate for BTM alongside Falkenberg, and spoke to The Times about this issue of ethnic disparity in donors. Like Falkenberg, Crofton was able to find multiple full matches on the BTM registry that allowed her to get a transplant seven years ago, but said, “For people who are not white, they have a lot less likelihood of finding a match.” She added that the team is trying to get the word out to get more people of color on the registry, saying, “We hope we can make the need for everyone to have that equal ability to find a match smaller.”
Beyond volunteering and riding, Falkenberg and Crofton have begun legislative advocacy work, lobbying Congress to provide legal support to donors. The two reached out to Joe Neguse, the U.S. representative for Colorado’s 2nd Congressional District for support. Falkenberg and Crofton had a virtual meeting surrounding their current work on a Life Saving Leave Act, which Neguse co-sponsored the next day. The act would work to allow 40 hours of nonconsecutive time off of work, and protect workers from being fired while undergoing the donation process. This process includes a physical exam and an injection to increase stem cell production, so the travel and donation can take up to two days to complete. So while not a paid leave, the act would mitigate the fear for potential donors of losing their job.
Alongside the act, Be the Match reimburses for associated costs with the donation process. “It’s common-sense stuff, just not the law right now,” Falkenberg said, and added, “Unfortunately, the people that are more likely to say, ‘I’m worried about losing my job’ also line up with the groups underrepresented on the registry. So, every donor who donates matters.”
To donate, become a donor and join the registry, or find out other ways to support the organization, visit bethematch.org. Eligibility to become a donor is met if you meet the health guidelines and are between 18 and 40 years old. For registration, completion of a health history form and a swab of cheek cells is needed. The swab kit is mailed to the registrant’s home.