Steve Wakefield remembers the lessons of Juneteenth — June 19, 1865 — the day more than two and a half years after slavery officially ended when slaves in Texas finally learned they were free. He doesn't want to see a similar delayed message around freedom from HIV. When a vaccine is finally developed that prevents the human immunodeficiency virus from developing into AIDS, he wants to make sure all of the people at risk share the news and equally reap the benefits.
Wakefield is a senior manager for core operations for the HIV Vaccine Trial Network (HVTN) — an international collaboration of scientists and educators based at Fred Hutchinson. And he is a man on a global mission to end AIDS. That means daily confrontations with the stigma surrounding HIV/AIDS and the myths and misperceptions that keep people from all communities and sexual lifestyles from testing for the disease and participating in clinical research trials.
Reaching communities at risk
In African-American communities, it means working to replace a legacy of distrust — rooted in the Tuskegee syphilis experiment — with information on scientific advances that increase understanding of the HIV vaccine-trial process. It means ensuring everyone involved in a clinical trial has access to condoms and counseling. It means making sure vaccine researchers, educators and volunteers look, act and sound like the people in communities they seek to serve.
Wakefield addresses these challenges and regularly speaks on the importance of HIV-vaccine trial participation in communities around the world. This weekend, he will speak at a National Black HIV/AIDS Awareness Day rally in South Seattle.
"I think one of the most exciting things for me today is that I get to combine my ability as an educator with my passion to help in the HIV epidemic," Wakefield said.
Wakefield's career began in Chicago, where he taught high school before leading two nonprofit organizations focused on AIDS treatment, prevention and adult education. Then, as now, Wakefield was driven by the enormity of lives lost and the rising rates of HIV infection.
"I was in a research study myself and you went in every six months for an interview and they asked you to keep track of the people that you know living with HIV/AIDS and when I reached 500, I told them I could no longer answer that question." Wakefield said.
Working amid so much loss seemed near unbearable. Then, in 1999, Wakefield learned of a grant Dr. Larry Corey had received to establish the HVTN. He recognized it as an opportunity for community education and real hope.
Knowledgeable of Corey's reputation with HIV vaccine research, Wakefield wrote and petitioned through friends for a job. At the time, Corey believed community education could wait. An eventual face-to-face meeting in Washington, D.C., resulted in an invitation to come to Seattle where Wakefield convinced Corey that in order to ever have informed consent, the public needed to be educated about HIV vaccines and a level of trust had to be established to support widespread participation in clinical trials.
"At the HVTN, the principal investigator at each site is responsible for a relationship with the community through the creation of a community advisory board," said Corey, PI for the HVTN and head of Fred Hutchinson's Program in Infectious Disease. "The model grew from Wakefield's vision, and it provides a solid foundation of community involvement that has improved our research."
Today, Wakefield heads a team of community educators working to create trust and open channels of communication between community members and scientists in more than 25 HIV-vaccine research sites on four continents.
"In Brazil, there's a saying that the heart can't feel what the eye can't see. And that's a country where a woman's greatest risk for HIV infection is being in a relationship with a partner that that she thinks is monogamous." Wakefield said the situation is similar in United States, where African-American women are the fastest growing population infected with HIV. In South Africa, the rate of AIDS infections and death is so overwhelming; community members don't do anything on Saturdays but attend funerals.
Recruiting for vaccine trials
"I know that in a 24-hour period, 14,000 new HIV infections happen around the world. That's about 580 people an hour. I know that human beings want to change their behavior and they can't often. The only hope of ending this epidemic from my perspective is a biomedical intervention," Wakefield said.
But herein lies a major challenge. In the early stages of HIV-vaccine development, research must be conducted on healthy people who are in situations where they are not likely to become infected with the disease. If the vaccine works, it will teach the body to produce antibodies against HIV, which means people who participate in clinical trials may test positive for HIV antibodies without actually being infected by the disease.
"And so what we have to tell people is that once they've been in a vaccine trial, 'if you go to the local heath department for a test or your insurance company decides to draw a test or you join the U.S. military, you most likely will test HIV positive.'" Wakefield said. He stresses the importance of educating all members of a community in which clinical trials are conducted and in communities without trials, so that myths will be dispelled and false-positive tests understood.
There are other misperceptions to overcome. Like the belief held by many African Americans — and echoed in comments by Nobel Peace Prize winner and Kenyan activist Wangari Maathai — that HIV/AIDS was manufactured in a laboratory for the purposes of biological warfare, specifically targeting black people. Plus memories of the very real Tuskegee experiment remain strong. It was a time between 1932 and 1972, when the U.S. government scientists told black men they were being treated for syphilis when in fact treatment was being withheld so they could study the course of the disease. Wakefield said building trust in the aftermath of such a tragic historic truth will involve cooperation from community leaders; in particular, African-American ministers who are often silent on the issue of AIDS. The job also involves educating people to the fact that unlike vaccinations for polio, measles and many other diseases, HIV vaccines will not contain any substance capable of causing the disease.
"The HIV virus would replicate in a human body, so we use something which is synthetic, Wakefield said. "We are trying to produce something that looks enough like HIV that the body is fooled and the immune system then creates the cells that would fight HIV if the person ever actually encounters the virus. The challenge is, the more the vaccine looks like the virus, the more likely you are to have this antibody response."
New educational approach
Communicating this information and breaking deep-seated barriers of distrust is the focus of the HVTN's Legacy Project. Introduced by the HVTN Community Education Unit last February, the Legacy Project is an educational approach to address the challenges of HIV/AIDS education in the United States. Wakefield said the project's intent is to "turn the Tuskegee legacy on its head" and create a new legacy of trust between vaccine researchers and the cities in which they are located. While the initial focus is on African-American communities, the project will target all populations at risk, specifically women, teens having unprotected sex and men who have sex with men. This month, HVTN investigators will meet to launch the next stage of the project with will include expansion into Hispanic and Latino communities. The goal is for each research site to be staffed by people who look, act and sound like the people they serve. It's one of the first steps towards creating an atmosphere where people will hear and be able to act on the truth.
The Magic myth
"One of the biggest myths in America today is that somehow because Magic Johnson looks healthy, he is healed of HIV." But Wakefield tells people, "It's research that helps Magic look the way he looks on a day-to-day basis." Research conducted at Fred Hutchinson has resulted in the discovery of therapies that may not have worked for cancer, but are working to control HIV/AIDS. Wakefield wants people to understand the safety of the science and participate in clinical trials so that when there is a vaccine, they too will benefit.
"I don't want there to be an HIV Juneteenth when it comes to a vaccine," Wakefield said. "The one large trial that we had in America had 5,400 people; 5,000 of those people were men who have sex with men. If that vaccine worked, we wouldn't have known anything about protection from vaginal sex, we would have known how the vaccine works in gay men only. We've got to do something to change who the people are who participate in trials if we are going to be able to find out if the vaccine works and protects the people most impacted by HIV today."
For Wakefield, that's reason enough not to rest.