On Black Futures Month, a Race Against Sickle Cell and a Chance for Healing

A woman smiling and looking at the camera
Sarita Wall is the vice chair of the Black and African Heritage Network

Sarita Wall started working at Seattle Children’s in summer 2019, and she knew immediately that she wanted to volunteer at her new organization to get involved with her new work community.

“I wanted to do something meaningful and be around people who share some of the same experiences and who look like me,” said Wall, who is an executive assistant at the Neurosciences Center.

She joined the Black and African Heritage Network and met the leaders of that inclusion network, or employee resource group, including Shakema Magee, the chair of the group. Wall said BAHN was “very involved in the Black community within Seattle Children’s,” which she appreciated.

Wall is now the vice chair of BAHN. Among other activities, BAHN coordinates the Annual Walk Run for Sickle Cell, which raises awareness and educates people about the disease. It also helps create a sense of community around sickle cell. The event was canceled for the last two years due to the COVID-19 pandemic.

Learning about sickle cell

Wall said she knew nothing about sickle cell disease until she joined BAHN and didn’t realize that the disease is one of the top killers of Black people.

“It’s a Black disease, though some white people do have sickle cell,” Wall said. “The difference is that white people have more bone marrow donors or have more people on the marrow donation registry. We have fewer chances of living if we have sickle cell, and we want to keep Black people alive and healthy. That’s our main priority because sickle cell is hereditary.”

Last Juneteenth, she and other BAHN volunteers set up a bone marrow screening table at Othello Park to test people to see if they would be a good match to donate bone marrow.

Unfortunately, Wall said, too many younger and median-age people, the ones who are in the desired age demographic, are not interested in donating marrow. She blames this on old stigmas that “it’s really painful, that you’re going to be down for a long time” after donating. She explained to them that it’s not painful anymore because science has changed the way doctors extract marrow, but it’s still hard to convince them.

“It was really disheartening. There’s an age range that we’re looking for, and the people who were interested were too experienced,” Wall said. “We don’t say ‘too old,’ we say, ‘too experienced.’”

Wall started her journey at Seattle Children’s at the Cancer and Blood Disorders Center, where she worked in the hematology department.

While Seattle Children’s Sickle Cell Program provides most of its care and teaching at Odessa Brown Children’s Clinic in the Central District, the program is built on strong collaboration with the Cancer and Blood Disorders Center. The CBDC, which is led by Dr. Mignon Loh, encompasses hematology, bone marrow transplant and cellular therapies.

Wall said she’s working with others at BAHN on a four-part documentary series that will feature a wide variety of people who share their experiences with sickle cell disease.

The series will have an educational episode about sickle cell.

A second episode will focus on a father who has a child with sickle cell. He will talk about what it’s like to be a parent of a child with the disease.

“The children have really painful events, and it’s hard to calm the kids,” Wall said.

Another episode will feature an “experienced” person who talks about what it’s like to live with sickle cell through adulthood.

The final piece will have Kakela D. Hall, president and CEO of the KD Hall Foundation, which has a research and education program about the disease. Seattle Children’s is one of the foundation’s partners.

Bringing about change

When she started at Seattle Children’s, Wall said there were annual drives for hair care products for children with textured hair because all the shampoos and conditioners were for common hair types.

“We had to have people donate the products,” she said.

She started asking why it was necessary to have drives each year for a product that should have been available for every type of hair.

Wall said she and a nurse, along with Workforce Inclusion Diversity, Equity, and Access team (formerly Workforce Diversity and Inclusion), started looking into it, and now they are piloting the program “Haircare is Healthcare” to make textured hair care products available on demand.

“If your hair is not cared for, that can hurt self-esteem, build depression,” she said.

Wall said the pilot program is another type of work BAHN does to build a more diverse community within Seattle Children’s.

In collaboration with the Juneteenth planning committee, BAHN also fought to make Juneteenth a company holiday and succeeded—even before it became a national holiday.

A journey to leadership

Wall said she chose to work at Seattle Children’s because it offered a better opportunity for career growth and development, which she lacked in other workplaces.

“There are not a lot of Black people in leadership positions in healthcare,” Wall said. “That kind of trickles down onto the patients and families, and it affects the patients and families because there’s no one that looks like them to represent them.”

“When I came to Seattle Children’s was the first time I was able to grow,” she said. “I’m not in a leadership role, yet— I’m still training, but I have a master’s degree in management and leadership, and Seattle Children’s has allowed me to do a lot of career development.”

She said part of the challenge is that different people have different ideas about diverse cultures. Even though she has a bachelor’s degree, she said, people in leadership positions might not be willing to promote her because she said she “has tattoos” or similar reasons.

“I don’t speak like everyone else,” she said. “That doesn’t mean I’m uneducated. It’s just how we speak in our environment.”

Wall said it’s not enough to get into a leadership position. She said being a leader also means pulling others up and getting them into leadership positions.

A chance to bring the community together

Wall said that before Seattle Children’s launched the Anti-Racism Organizational Change plan, there were some disparities that needed to be addressed. But she said the organization has the right idea.

“We’re still just working internally to make Seattle Children’s into a place where everyone feels that they belong and bring awareness to what we need as a community and pull together,” she said. “We collaborate with other inclusion networks, and we are trying to change the culture.”

Part of that change means changing the culture so that it becomes “very inclusive, no matter who you are.”

“We’re going in the right direction,” Wall said.