By Sally Douglas Arce
Kevin Weston was a 44-year-old journalist living in Oakland. He strove to take journalism in new directions while giving a voice to communities left out of the conversation.
Weston died in June 2014 at his home after battling a rare form of leukemia. He was 45.
Weston was African-American. His only hope for survival was to find a matching donor. Only about 8 percent of the nation’s 12.5 million registered bone marrow donors are African American, which made Weston’s chance of finding a bone marrow match quite slim.
“One day our lives were amazing,” says Lateefah Simon, Weston’s wife. “He was diagnosed with leukemia, and two years later he died.
Race does matter.
You can save a generation from pain, agony and loss. More donors for all people of color are needed. It is unnecessary that Black and Brown people are dying this way.
Weston died young, and it was avoidable. Donors can create hope. People can live longer.”
Brandi Lewis is another African American with a blood disorder. In 2008, at 19-years-old, she was diagnosed with Aplastic Anemia. It was her freshman year at University of North Alabama.
She needed a marrow match in order to have a transplant.
No one in her family was a match. No one on the Be the Match registry was a match. Unable to have a marrow transplant, Lewis had platelet transfusions twice a week. Her immune system was compromised, and Lewis spent one year at home and did not go outdoors.
In 2010, she was in remission and returned to college, graduating from Northern Alabama University in 2012.
In 2013, while in remission, Lewis and her mother started a nonprofit organization called Brandi’s Blessings to spread awareness about blood disorders and support blood disorder patients.
Brandi and her mother fundraise to give care packages to people in the hospital and help pay for co-payments and medical bills.
Then, in 2014, Lewis relapsed. “We looked in the national marrow registry, and you would think that six years later, more people would have registered, and I would have found a match,” Lewis says. “But that was not the case. There was no match for me. This was very hard on my family.”
Lewis is still looking for a donor. “People should join the registry and become committed donors,” Lewis says. “You are giving someone like me their life back.”
In 2015, an estimated 162,000 people in the U.S. were diagnosed with a serious blood disease.
Finding a marrow match can be like finding a needle in a haystack, and ethnic minorities face the worst odds, say medical experts.
Registering is simple – just a swab of the inside of your cheek. People of color, who are 18 to 44 years old, are encouraged to commit to registering.
Some of many marrow drives will held Tuesday, Wednesday and Thursday – Feb. 23 – 25 from 11 a.m. to 2 p.m. at UC Berkeley, front of Dwinelle Hall, Sather Plaza and South Drive, at UC Berkeley.
To find a registration drive in your area, go to www.aadp.org/drive/