Over 12,000 patients in the U.S. are diagnosed with life-threatening diseases, like leukemia and lymphoma according to the National Marrow Donor Program. For many, a marrow transplant is the best or only option. Of these patients, approximately 70% cannot find a donor within their own family on account of hereditary matching issues.
Kanishka Patel ’14 is helping to spearhead a bone marrow drive at the college this spring. She explained that she is personally affected by such issues as the process has touched her family.
“This issue is very near and dear to my heart as one of my own family members is currently struggling to find a match,” said Kanishka Patel ’14. “[The family member] is a father of two girls, and his family and friends have been searching all across California for a potential donor without any luck.”
Erica Kouka’15 is grateful for the initiative Patel has displayed in organizing the drive, and has become involved herself, recognizing the importance of the cause.
“I decided to get involved because of a news segment I watched about three children who suffer a pretty rare genetic defect called Fanconi anemia,” she said.” The story detailed many disappointments the family has faced in dealing with indecisive potential donors, and it really moved me because I’d never realized how much bone marrow transplants can change the quality of life of people facing a vast array of diseases.”
Patel said that the drive will take place in the main dining hall in Sharples on Friday April 26th and Saturday April 27th. According to her, the drive, which she describes as more of a “registry,” entails a cheek swab and 5 minutes of filling out forms. Once participants are in the registry, doctors around the world can potentially contact them if they are found to be a match.
In order to carry out the drive, Patel and other organizers are working in conjunction with Gift of Life, a non-profit organization that provides the necessary tools, including cheek swab kits. They also collect the kits and add the swabs to the registry. Gift of Life is part of a world-wide registry, which means donating a swab on the east coast of the United States could potentially help someone on the other side of the world.
“Once you are found to be a match for a patient, you are contacted by the patient’s physicians and you are not financially responsible for the procedure—they take care of everything,” she said.
Like any surgery involving fluid or tissue donations, however, marrow transplants require specific matches, creating difficulties when searching for donors.
“It is through my uncle’s experience that I discovered the huge racial disparities in finding a match, given the hereditary nature of tissue types,” she said. “While the National Marrow Donor Program (NMDP) and other registries are more diverse than they were a few years ago, patients, including my uncle, are still facing obstacles.”
As of January 2013, NMDP’s donor registry was 67% white, meaning minorities in the United States are often at a disadvantage when it comes marrow transplants. The rest was 10% Hispanic, 7% African American, 7% Asian, 4% Multiracial 1% American Indian/Alaska Native and 0.2% Native Hawaiian or Other Pacific Islander. The lack of diversified donor contribution is a problem, but Patel believes that misconceived fears surrounding the donating process have led people to shy away from helping the cause.
“I think some of the problems we face when trying to engage others and encourage them to donate are the negative misconceptions surrounding the process of registering and even donating,” Patel said. “Talking to my own peers and even Swarthmore students, I see how scared people are, thinking it is a painful process. Many people don’t know that you can get on the registry with just a cheek swab and that about 70-80% of the time, the donation is done through something akin to a five-hour blood donation.”
This type of donation is called a “peripheral blood stem cell donation,” and involves an injection that moves blood-forming cells out of the marrow and into the bloodstream. The donor’s blood is removed, and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to the donor through the other arm.
The procedure most often associated with marrow transplants, though, is the surgical process in which liquid marrow is withdrawn from the back of the pelvic bone. Patel said that surgery of that nature only happens 20-30% of the time.
“Even this isn’t too terrible of a procedure,” she said. “You’re in the hospital in the morning, and out that afternoon. During the procedure you are given either local or general anesthesia so you feel no pain. Of course side effects vary but a majority of people both describe the post-surgical pain as being no more painful than having a sore back.”
Patel further emphasized the importance of the drive, citing the realization that those who donate could literally save others’ lives.
“The important thing to note is that while even after registering, you can decline to donate but I really think you should only join the registry if you are sure that this is the right decision for you, as someone’s life is on the line.”