By Kirk Maltais
It is never an easy thing to deal with cancer at a young age. Such is the case of 17-year-old Keith Casselle, diagnosed with leukemia in January.
The Clover Hill High senior has been battling the disease, his efforts documented by the Richmond Times-Dispatch last week. Casselle told the paper of his confusion in the wake of the diagnosis.
“I didn’t know what I did wrong to my body,” Casselle told reporter Jeremy Slaton.
Since January, Casselle has undergone a grueling chemotherapy, which appears to have beaten the cancer into remission. However, should the leukemia return, Casselle will be in need of a bone marrow transplant. The Journey Christian Church in Midlothian, with the help of the Be The Match organization, recently held a drive to help the Casselle family find a matching donor for Keith. Of the thousands that volunteered, one may be a match, a lifesaver should Keith’s leukemia return.
But should Keith’s leukemia appear again, that one match is certainly hard to find. According to statistics from the United Network for Organ Sharing, as of this writing, there are 113,530 patients on the waiting list for organ and tissue transplants. By comparison, UNOS reports 28,535 transplants performed in January 2012. While this is a sizable number, and a chunk of the total number, the demand for organs and tissue clearly outweighs the supply.
That’s where organizations like the Be The Match Registry come into play. Be The Match specializes in bone marrow donation and facilitating successful transplants for cancer patients like Casselle.
For some faced with disease, the transplant that saves their life is hard to come by.
“We are the world’s resource for bone marrow transplants,” says Nadya Dutchin, National Account Executive for Be The Match Registry. “We basically are the registry.”
Be The Match is a varied organization, not only operating as the registry for bone marrow transplants, but also acting as an awareness raising organization and a counseling group for patients and families like the Casselles. Be The Match also offers financial assistance for families in need.
According to the foundation, the odds are, while not insurmountable, stacked against patients that need bone marrow transplants. An allogenic transplant, which is the transplant of bone marrow or cord blood, requires a match of human leukocyte antigen (HLA) tissue. HLA’s are used by the immune system to determine which cells are foreign and which ones belong to the body. By finding donors that have similar HLA’s as the patient, the chances are increased that the body will accept the new cells and the transplant will be successful.
Doctors begin the donor search by looking within the patient’s family. Brothers and sisters have a 25 percent chance of matching the patient. However, even with that chance, 70 percent of patients don’t find a suitable donor within their family.
Then it comes down to finding an outside donor. According to Be The Match, there are 18.5 million potential donors and 590,000 cord blood units available to patients with leukemia and other diseases. In order to find a match, a patient’s HLA must match with a donor in 8-10 basic categories at a minimum. Factors such as blood type, ethnicity, and similar traits all come in to play. According to Dutchin, the complicated nature of African American genes makes it harder for patients to be matched with donors.
“The African genome had the longer time to evolve,” says Dutchin “if you bring it here and mix it with all of the wonderful cultures that we have here, you have a very complicated HLA-typing.”
Because of these kinds of odds, it is important for there to be an ever-increasing pool of donors.
However, there lies. the problem. According to the National Cancer Institute, there is a discrepancy in the African American community, where it is the only one to be experiencing an increasing level of cancer and cancer-related deaths. This is due to a variety of factors, including the fact that African Americans are more likely to be diagnosed when the cancer has hit a late stage than other ethnicities.
“I think the lack of access to health care affects people of every ethnicity in lower socioeconomic backgrounds,” says Dutchin. “When they don’t know that a transplant is an option for them, how can they then go forth and say ‘Hey, we need to have a donor drive’?”
According to Dutchin, though, it often takes real-life examples, like Keith Casselle, for people of all kinds to realize that disease, and the need for treatment options such as transplants, is a very real thing.
“When people see a real person, somebody in their community that lives around the corner from them, goes to their high school or college, or works for them, they are more apt to stand up and take action,” she says.
For the black community in particular, though, Dutchin has noticed what she calls “a healthy level of fear” in dealings with the medical community.
“That is something that is bigger than Be The Match,” she says. “We as health care providers need to try and overcome that stigma, and all we can do is what we’ve been doing, which is go out and educate, and do so passionately and honestly.”
These factors in part explain the disparities in the amount of organ and tissue donations available to African American patients in need of a transplant. According to the DHHS’ Office for Minority Health, Blacks donations made up 14 percent of the total organ and tissue donations. Twenty nine percent of patients in need of a transplant were black, making the demand far exceed the current supply, even when considering that the total number of patients needing transplants was much larger than the amount of transplants conducted.
Blacks donations made up 14 percent of the total organ and tissue donations. Twenty nine percent of patients in need of a transplant were black, making the demand far exceed the current supply.
It is foundations like Be The Match that are on the front lines, trying to raise awareness of this current problem, so patients like Keith Casselle can get the transplants they may need to recover from their illness. The battle is an ongoing one, with Be The Match reaching out to college campuses, churches, and other places, to spread the message that your generosity can save a life.
Dutchin emphasizes that not only is it generous to donate, but it is not nearly the painful experience some believe it is. Oftentimes, donating bone marrow is as simple as giving blood, only a sit-down session that can take a few hours out of the donor’s day, but may save a life.
“We need lots and lots of people to donate,” says Dutchin.