Photo by Robert Hood / Fred Hutch News Service
Fred Hutchinson Cancer Research Center’s Steven Wakefield will be one of five grand marshals in the 2018 Seattle Pride Parade on June 24, an honor that is especially fitting given this year’s theme, “Pride Beyond Borders.”
By his count, Wakefield has crossed many borders, traveling to 27 countries as external relations director for the Hutch-headquartered HIV Vaccine Trials Network, a National Institutes of Health–funded global group of scientists, educators and community volunteers working to develop an HIV vaccine. Starting in 2000 as one of the first core employees hired, he has logged countless miles to bridge differences among cultures, races, ethnicities, genders, sexual orientations and scientists and nonscientists — whatever it takes to assemble the giant village needed to find an HIV vaccine.
“He’s a gift,” said past Fred Hutch president and director Dr. Larry Corey, who founded and leads the HVTN. “In this kind, beautiful way, he’s created a culture of diversity and community that I hope has permeated our entire organization. I know it has permeated me.”
After coming to the Hutch, Wakefield launched the Legacy Project to engage underrepresented groups in HIV research and clinical trials. He also volunteers as a Pride Foundation board member, encouraging young lesbian, gay, bisexual, trans and queer people throughout the Pacific Northwest to become active in their communities. Before coming to Seattle, he was one of the early organizers of the AIDS Vaccine Advocacy Coalition, now AVAC: Global Advocacy for HIV Prevention, which formed in 1995 to push for a preventive vaccine. He continues to serve on its board, among others.
Wakefield was an HIV advocate in his hometown of Chicago from the time the first AIDS cases were reported nationwide in 1981 and a leader in the LGBTQ community since 1976. But one of the first divides he had to bridge was even closer to home — how to be both black and openly gay.
A family tradition
“A lot of the values that I have came as a result of having parents who always challenged us to be the best person you could be,” Wakefield said, recalling his mom and dad, who have been gone eight and two years, respectively.
His parents walked the talk. When he was growing up in Chicago’s South Side, they were active in their church and community, serving on the school board and PTA. They reluctantly supported their son’s involvement in the Rev. Jesse Jackson’s Operation Breadbasket, which became Operation Push.
Having grown up breathing community leadership, it should have been no surprise that as a young gay man, Wakefield didn’t just enjoy gay bars, he worked to make them welcoming to people of color. Or that he began to volunteer at the Howard Brown Memorial Clinic, a storefront clinic testing and treating sexually transmitted diseases in gay men who felt too embarrassed and stigmatized to seek care elsewhere. Following family tradition, he soon became the volunteer coordinator and then chair of the clinic’s board of directors.
What wasn’t part of family tradition was being gay. Coming out to his deeply religious parents was so hard that for five years, he met with them in restaurants because being in public, he said, ensured they would be civil to each other. But here again was vintage Wakefield: They kept on meeting until they worked through it.
One New Year’s Day well into the process, the Chicago Tribune ran a story about his advocacy work with a headline identifying him as “gay activist Steve Wakefield.” His parents’ phone started ringing off the hook at 6 a.m. When his dad — for whom Wakefield is named — answered, confused family friends said, “I didn’t know you were gay!”
His dad not only rolled with it, he made sure everyone who came through the door that evening for his annual New Year’s party saw the paper. (He did later allow that his son’s preference for dropping the “Steve” and going by the single name “Wakefield” — a holdover from high school football days — wasn’t a bad idea.)
Both parents came to recognize the impact that their son’s career has had, both in Chicago and later in Seattle. Three years ago, when the elder Wakefield was diagnosed with advanced stomach cancer, the conversation had long moved on to what united, not divided, them.
“We hurried and had all those conversations you had to have,” Wakefield said. “Then it turned out we had another eight months of time to just be with each other.”
“If we learned anything from the AIDS epidemic, it was about community members taking care of their own.”
Surviving the plague years
Like everyone who lived through the early AIDS years, Wakefield had learned all too well how to have those conversations.
The Howard Brown clinic, with its expertise in sexually transmitted diseases and its reputation as a haven from stigma and homophobia, became an early bulwark against the emerging epidemic. The small community clinic landed one of the first publicly funded AIDS research grants, and in 1986, Wakefield quit his job managing chemical manufacturing to help the clinic expand.
The work was all-encompassing professionally. It was also devastating personally.
Having long sought a partner who shared his passion for community service, Wakefield found one — only to see his lover fall ill with AIDS. He returned to their home one day to find his partner collapsed on the floor after a seizure. The first ambulance he called refused to come. The second demanded cash up front. At the hospital emergency room, Wakefield filled out the forms, and then was told to throw the pen in the garbage if he has the same illness as his partner.
After his partner died, the terrible grief that followed spiraled into what Wakefield describes as a clinical depression, albeit never formally diagnosed. In addition to loss, he struggled over survivor’s guilt. He was — and remains — HIV negative.
Needing time to recover, he quit the clinic. But once he was back on his feet, he went to work for the fledgling Test Positive Aware Network, which would become the Midwest’s largest HIV/AIDS information and support provider.
“If we learned anything from the AIDS epidemic,” he said, “it was about community members taking care of their own.”
At the time — before the advent of lifesaving antiretroviral drugs in 1996 — that essentially meant lobbying fiercely for research and treatment while providing emotional and practical support until the person with HIV died. Half the members of the board that hired Wakefield died within his first year on the job.
During his years there, he took part in a study looking at the epidemic’s psychological impact. Researchers would ask how many people he knew had died of AIDS. When he reached 500, Wakefield decided he couldn’t answer that question anymore. Needing another break, he began working with runaway and homeless kids at The Night Ministry.
When friends asked about his first week at his new job, he recalls replying, “Oh my God, it was great — nobody died.”
On to Africa
Wakefield soon learned that runaways often turn to sex work on the streets to support themselves — and that puts them at risk of contracting HIV. Once again, he was back doing AIDS work. He set a goal of putting in place prevention and outreach programs.
In June 1999 — three years after the United States began reining in the epidemic through antiretroviral drugs — he left his Night Ministry job and traveled to Africa, where treatment was not yet available and hope was scarce.
To know Wakefield today, with his vivid African print shirts and Buddha-like smile, it’s hard to imagine how he — how anyone — lived through such impossibly hard times.
“The most important thing I learned was that I could get through that much pain,” he said. “We learned that there was spiritual process that could happen in terms of the human spirit as a result of pain.”
Resilience is one result of that spiritual process. So is persistence.
“We have little control as humans,” Wakefield said, outlining a hard-won philosophy that could serve advocates of any kind. “We can make suggestions. We can continue to take up the fight. I have had a lot of great moments that were just about being in the right place at the right time. I tend to focus on those.”
Through earlier contacts, Wakefield wound up working with South African epidemiologists Salim Abdool Karim and Quarraisha Abdool Karim, pioneering husband-and-wife HIV vaccine researchers who would later join the HVTN. Wakefield helped them develop the kind of volunteer community advisory board that would become a hallmark of the HVTN and find ways to talk about vaccine research when native languages had no words to describe it.
Working in South Africa only reinforced Wakefield’s belief in the need for and power of community.
“People who respond to the needs of their own community are the ones who can best guide us in developing research agendas that are appropriate,” he said. “They are the true health navigators.”
Creating the change
By October 1999, Wakefield was back in the United States and ready to continue the vaccine work he had started in South Africa and which he saw as the best hope for a long-term end to HIV. When he heard that Fred Hutch’s Corey had just been awarded an NIH grant to organize a vaccine network, he immediately got in touch.
An interview in Corey’s Fred Hutch office spilled over to dinner at Corey’s house. By year’s end, Wakefield turned off his computer in Chicago and turned it back on in Seattle in 2000.
“Little did I know what a gem and what a close friend I got to come to work with me,” Corey said. “He understands science, he asks hard questions and he pushes back when anything doesn’t seem right or principled. He has been the designer of our entire outreach and communications program as well as positioning HVTN at the intersection between the science and the public — the people we’re working for.”
For Wakefield, the HVTN has been a marriage of job and calling. He travels the world, figuring out how to do research with meaningful involvement of those most affected by the ongoing epidemic, which in the U.S. means young black and brown gay men and in sub-Saharan Africa is vulnerable young women.
Part of what drives him now is the excitement of having an unprecedented four late-phase trials in the field at the same time and early-phase trials opening weekly.
“The advances we’ve seen in last five years exceed the ones we’ve seen in the previous 10,” he said.
But those advances don’t mean Wakefield is ready to let up, whether on finding a vaccine or fighting other battles, be they for marriage equality or against laws restricting bathroom access for transgender people. The Seattle Pride recognition and accolades this week from the Puget Sound Business Journal remind him of a poem that the runaway and homeless kids he worked with in Chicago gave him when he left that job.
“They wrote that they weren’t just running away from horrible situations, they were running toward a life that would be different and better for them — a home where they could see change,” he said.
Wakefield is doing everything he can to make that world real.
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Mary Engel is a staff writer at Fred Hutchinson Cancer Research Center. Previously, she covered medicine and health policy for newspapers including the Los Angeles Times, where her editorials were part of a healthcare series that won the Pulitzer Prize for Public Service. She also was a fellow at the year-long MIT Knight Science Journalism program. Reach her at email@example.com or on Twitter, @Engel140.
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