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Fighting leukemia and racial inequality at the same time

Seven months ago, things were going great for Kevin Weston. He was with the woman of his dreams, he had a baby daughter and a teenage stepdaughter, and he was about to start a prestigious journalism fellowship at Stanford University. But then he got sick. He was diagnosed with a raging infection and acute leukemia, a cancer of the blood. Lateefah Simon, Kevin’s wife, recounts what came next.

“We were told he needed a bone marrow transplant to cure this cancer, and we needed to push, and find a match. We did the searches through the international bone marrow registries, and we did not find a match.”

It’s hard for anyone to find a bone marrow donor, but Kevin Weston is facing even worse odds. It’s not because of the type of his cancer or even his insurance – it’s because he’s African-American.

Most couples renew their vows after decades of marriage. But Lateefah and Kevin were married just six months ago, when Kevin was still in the hospital. They may not have decades ahead.

Today, they look happy, surrounded by friends and family. The ceremony is taking place in a beautiful room, lit up from a ceiling made of skylights. Little kids in their best clothes are chasing each other through the seats. It’s a special occasion, a break from reality.

Kevin is currently in a “chemo-induced remission,” meaning there aren’t any cancer cells in his blood. But if he stops going to chemotherapy five times a week, the cancer will come back. That’s why Kevin needs a bone marrow transplant – he has other options, but he and Lateefah know it’s his best chance for a successful treatment.

“When you’re fighting leukemia, it’s an up and down game,” Lateefah explains. “Some months, you’re in remission, and other months you might have active cancer cells, so we’re kind of in an in-between moment, so we’re in our next stage of cancer treatment to move Kevin to transplant.”

Bone marrow transplants aren’t like blood transfusions. There aren’t different marrow “types” – it’s way more complicated. When you need a transplant, it’s important to find a donor whose genetic composition is as similar to you as possible. The chances of meeting a stranger that’s your match are extremely small. Even siblings only have a one in three chance of matching. Because different racial groups are more genetically similar, it’s much easier to find a match within your race. And that’s where Kevin’s problem lies.  

Dr. Manali Patel is a researcher at Stanford, where she studies hematology and oncology – or, blood and cancer. She explains why Kevin can't find a match.

“We know that from the National Marrow Donor Program, that there’s very few African-Americans are in the registry. There are about 9 million potential donors. Only about seven percent are of those are of African-American or Black minority status.”

Dr. Patel has found that African-Americans survive leukemia at a much lower rate than whites. There are a lot of reasons for this, including access to insurance and proper caretakers. But Dr. Patel says a main issue is the problem Kevin Weston is facing – the donor pool just isn’t big enough. And as a doctor, that can be a hard truth to stomach.

“We oftentimes forget how much of an issue it is until we are faced with a patient who is sitting in front of us and for reasons that are outside of our control as a doctor we can’t cure the patient.”

Kevin’s doctors did put him on a waiting list, but he can’t be on it forever. The chemo has killed most of his white blood cells, so he basically has no immune system. It’s been a frustrating and heartbreaking process for Kevin and Lateefah.

“We first learned that we had  a possibility of two matches that were nine out of 10, basically 90 percent tissue matches, for Kevin,” But they for whatever reason were quote unquote not available. So they could have backed out at the last minute, they could have, their health could have changed since they were in the registry, they could have not updated their information of where they were so when we tried to contact them they were not locatable.”

So Kevin and Lateefah decided to take matters into their own hands – if the registry didn’t have a match for Kevin, then they were going to find one. They were hopeful, given that both Kevin and Lateefah are active in their community. Lateefah is a Macarthur Fellow whose work revolves around civil rights issues, while Kevin is a journalist and works with young people in media. But it proved more difficult than they had imagined – until they found the Asian American Donor Program.

“In the past 23 years we’ve recruited about 150,000 donors here in the Bay Area.”

Carol Gillespie runs the AADP, which was originally founded to help an Asian friend find a bone marrow match. She explains that awareness is the biggest obstacle they face in most communities.

“So if this doesn’t happen to you, someone in your life, your friend, your mother, your family member doesn’t have leukemia, how would you ever know that a bone marrow transplant is needed? So our job is to go out there and constantly bring this awareness.”

And not just about leukemia, but about what it means to be a donor. Carol Gillespie says most people don’t know that it’s actually fairly easy.

“Seventy to 75 percent of the time now the physician is going to request peripheral blood stem cells, so that’s taking the stem cells from the blood system, from the...veins in your arm,” she explains.

In recent years, the AADP has branched out to other minority groups in the Bay Area that need help finding marrow donors. So when Kevin needed a match, they sprang into action. With AADP’s resources and help from friends, Lateefah planned their own donor drives to help Kevin find a match. They set a big goal: one thousand new African-Americans registered. And that’s when their mission became about something bigger than just saving Kevin's life. Kevin says that’s just the way he and Lateefah work.

“When there’s an issue that’s affecting people if we can sort of vision a way to make a difference then we usually take that opportunity to do it. So it’s not weird to be in a position to be educating people on an issue that they may not know about, I think it’s just right in the spirit of what we try to do anyway. It’s just in this particular issue I was as ignorant as everyone else until I was faced with it.”

Lateefah says Kevin is still getting used to being the center of attention.

“I think for the first time in his adult life, he’s asking people to help him out, and I think it’s great. And so, I’m pushing him to feel really good about being a cornerstone inspiration to a ton of people who right now are in their homes and in his situation and for whatever reason don’t have the community or the auspices to organize and galvanize the community, so I think it’s cool. Right Kevin?” she laughs.

And that’s mainly why Kevin and Lateefah are renewing their vows today – which doubles as one of their biggest donor drives yet.

Ayoka Turner, who has been leading the search for Kevin’s match, announced during the ceremony that they had registered 80 new donors that day to big applause. That’s 80 new people, who could potentially be bone marrow matches for Kevin, or another patient in need. Lateefah hasn’t lost sight of her number one priority: to find a match for Kevin. But she says this terrible ordeal has made her broaden her idea of social equality – something she has fought for her whole career.

“You know, we’ve been fighting for our communities, we’ve been fighting for racial justice, economic justice, that’s who we are as a couple and that’s what’s been so beautiful and beneficial about our own contributions. But my realization, especially when Kevin was in the ICU, I was really clear there’s no justice without health.”

This problem isn’t unique to the African-American community. Hispanics and Asians are also underrepresented in the Be The Match registry. Multi-racial people have the hardest time finding a donor, because they need a match with the same mixed background. And there are other obstacles to getting a transplant, like limited health insurance or getting too sick before you have time to find a match. In all, only half of people who need bone marrow transplants ever get them. Kevin Weston is hopeful, but he’s still waiting.

You can find more information about registering to be a bone marrow donor at bethematch.org, and follow Kevin and Lateefah in their search atkevinandlateefah.com.