‘I would truly like to see an HIV-free generation’

Deborah Jones Weiss, Ph.D., M.Ed., still has vivid memories of women bursting into laughter and lively chatter in the room next to her office at the Miller School of Medicine in the mid-90s.

The women were all HIV positive and part of the SMARTEST Women’s Project—one of the first HIV initiatives started by Stephen Weiss, Ph.D., M.P.H., Deborah Jones Weiss’ husband and longtime collaborator. The psychologists met shortly after joining the Miller School in the 90s, and together have created a nearly 20-year legacy in behavioral medicine that’s helped generations of women in Miami, as well as HIV-impacted communities in South Africa, Zambia, Argentina and India, overcome the barriers of living with and being at risk for HIV.

The SMARTEST Women’s Project stood for Stress Management and Relaxation Training/Expressive–Supportive Therapy. “There were participants of different ethnic backgrounds who weren’t able to share their status with anyone due to stigma,” said Jones Weiss, research professor of psychiatry and behavioral sciences and co-chair of mentoring for the development core at the Center for AIDS Research. “The program was a safe haven for them to meet with other women who have similar experiences. It was really a terrific thing.”

Stephen Weiss, professor of psychology, psychiatry and behavioral sciences, developed an interest in HIV while earning his Masters of Public Health degree from Johns Hopkins University. He said integrating biomedical and behavioral science perspectives within the public health and medical arenas is half the battle in producing better health outcomes. “Once you lift the depression, it allows them to deal with HIV,” he said.

Stephen and Deborah joined UM in 1993 and 1997, respectively. Miami’s complex population and the University’s progressive, multidisciplinary HIV and AIDS research were the draw.

Today, the couple remain each other’s closest research collaborator. In a chat with Medical Communications, they explain the biomedical and behavioral factors of Miami’s HIV epidemic, aspirations to create an HIV-free generation and stem the depression suffered by local HIV-positive African-American women and their recent work in Zambia and rural South Africa.

What attracted you to the University of Miami?

Stephen Weiss
Visiting Miami as a young boy in the 1940s, I resolved to return someday to live in this magical paradise. It took me nearly 50 years to get here, but I’ve never regretted the move. Retiring after nearly 20 years as Chief of the National Institutes of Health’s Behavioral Medicine Branch, I was attracted to the stimulating environment for HIV research on both UM’s Coral Gables campus and at the School of Medicine. Although I had planned to fully retire from the Miller School after five or six years, somehow one challenge led to another and here I am 22 years later.

Deborah Jones Weiss
Prior to coming to UM, I was doing HIV work in Texas. I became interested in HIV and trauma, particularly the trauma that’s experienced immediately after diagnosis. I had heard a talk by Gail Ironson on the trauma associated with Hurricane Andrew. She was also interested in HIV. At the time, UM was one of the only places in the country where they were working on trauma and HIV.

Describe how a person’s thoughts affect their health.

Deborah Jones Weiss
There’s a sub-discipline of psychology called health psychology, which focuses on areas where behavioral and biological factors interact to produce disease or protect against it. It’s recognizing that there’s a biopsychosocial component to chronic disease, which sets the tone and the trajectory for how someone deals with illness and the physical outcome of illness.

Stephen Weiss
Part of the science of behavioral medicine is understanding how thoughts and emotions can have an impact on the body and vice versa. For example, when you’re feeling good, your body feels great. When you’re feeling depressed, everything feels terrible. Conversely, when you’re ill or injured, you can become depressed. Typically, this worsens the situation and may delay the healing process. It’s a two-way street and our brain serves as the controller of those processes.

What are some of the mental hurdles for people at risk for HIV or living with the virus?

Stephen Weiss
When people think about a contagious disease, it can be pretty frightening, especially if it’s a fatal disease. Cognitive behavioral therapy is one of the techniques that we use to get people to think differently about a situation that’s been a stumbling block for them.

Getting people into treatment, HIV prevention and identifying how people put themselves in situations that make them vulnerable have been common themes in our work both here and abroad. We’ve also looked at what factors determine whether someone will use a condom when in a high-risk sexual situation.

Deborah Jones Weiss
HIV treatment or prevention definitely has an Achilles heel: acceptability. In some cases people may not be able to accept what they should do to prevent transmission or stay healthy. For example, most men in Zambia were not interested in considering circumcision, despite strong scientific evidence of its effectiveness in protecting men against HIV infection. Our research focused on creating a biobehavioral intervention to increase acceptability of the procedure, resulting in significant increases in the number of study participants undergoing circumcision in Zambia.

How did the SMARTEST project help local HIV-positive women?

Deborah Jones Weiss
There were participants of different ethnic backgrounds who weren’t able to share their status with anyone due to stigma. The program was a safe haven for them to meet with other women who have similar experiences.
The project reflected Miami’s rainbow population so we had African-American, Haitian, Hispanic and white women. As the project developed, we created a second component that was language specific. My office was next to the room where the meetings in Creole were held, and I remember hearing the women laughing and sharing stories amongst themselves. They were so free and open. We still see the women out in the community, and they marvel at how the group meetings changed their lives. Some of those women have become community leaders.

Stephen Weiss
The one major effect the project had was on depression, which was so profound in these women that it immobilized them. However, once you lift the depression, it allowed them to deal with HIV. Even now, if women are able to overcome that inertia, then the likelihood of them having a better psychological as well as a physiological effect goes up.

What have been some of the most notable changes that you’ve seen over the years with at-risk and HIV-positive communities in Miami?

Stephen Weiss
When we started, AIDS was essentially a death sentence. With the advent of antiretroviral drugs people are not only less afraid but also less cautious. Certain populations, including young gay men, started disregarding safe sex practices. Essentially, in areas where we thought we had a decrease in incidence of new cases of HIV, they’ve started to spike again.

Overall, people are a lot more informed today. In the early years, there was a lot of misinformation as people were really unsure of how the disease spread, which added to the fear. With the improvement in antiretroviral drugs we also know that if people will stay on course with their drugs, it can reduce their risk of infecting others by as much as 96 percent.

Deborah Jones Weiss
HIV is increasing among younger women in Miami between the ages of 15 and 25, who are also part of our studies. In contrast to the past, the women who were recruited for our studies in the 90s were older with a mean age of 39. However, younger infected women, some of whom may have been born with the virus, are much harder to get involved in research studies than older women. Younger women are diagnosed and added to the Centers for Disease Control and Prevention’s database but sometimes that’s the most you’ll know, which suggests to me that those women are disconnected from the HIV community and the support that’s available.

Talk about some of your latest projects in South Africa and Zambia.

Deborah Jones Weiss
Our latest work in South Africa focuses on reducing mother-to-child transmission. We work hand in hand with an organization called Human Sciences Research Council. The work can be exhausting because you have to be “on” all of the time. We train the organization’s field staff, many of whom are HIV positive. We use the “train the trainer” model because it is sustainable and helps ensure that the work continues.

People are extremely poor in the districts where we work in rural South Africa, and about half of the women are finding out that they are HIV-positive while they are pregnant. Mother-to-child transmission often occurs during breastfeeding, which is the best option that rural African women have since there isn’t really any clean water to mix with infant formula.

The problem is that more than 75 percent of the women have not told their spouses their HIV status and often have to hide their medications, which can become a problem with adhering to treatment and thus increases the risks of transmission to their infants. They have lots of fear about their health and domestic violence if their status becomes known. The mothers also have to hide the statuses of their children. Overall, it’s a very complex situation. The men know that the women get tested so they use that as an excuse not to get tested themselves. So understandably, the women face high levels of anxiety. Depression and talk of suicide are common among them.

Stephen Weiss
Our project helps prevent mother-to-child transmission by looking at ways to engage the husbands or male partners in the HIV testing and counseling process, which will help the women overcome their fears. That will in turn increase their likelihood of accepting and keeping with the treatment regimen and protecting their children.

In Zambia, we just wrapped up a project that promoted male circumcision as a means to reduce infection. This is based on studies showing that the loose foreskin around the penis has cells that are more vulnerable to HIV, so not being circumcised makes a man more prone to HIV infection. The majority of men in Zambia weren’t interested in circumcision, so we began a study that focused on how men could become informed as to how circumcision could benefit them and their wives or partners. The study was successful and the next phase of the study will look at whether the concept could be expanded on the national level in Zambia.

What is it like to work with your spouse?
Stephen Weiss

We’re each other’s closest collaborator and mentor and it works because our interests are both complementary and similar. We work together in some capacity on almost all of our projects.

Deborah Jones Weiss
We have different skills. He has a big picture view of things and I’m more of a nuts and bolts person. But I couldn’t do the work that I do alone, because for me it requires a lot of brain power and stamina. I need his input on everything, and I always ask him to be involved with thinking concepts through.

What are your goals?

Deborah Jones Weiss
My goal is to mentor people to become mentors in HIV research. I want more people to come into the field and to be able to pick up the kind of work that I do and also contribute their own ideas. We work in a collaborative field, so it would be great to get a team of people who will actively guide each other in HIV/AIDS research. Dr. Maria Alcaide and I recently attended a workshop on training mentors and we are keen to offer a workshop here at UM to try to create the next generation of mentors in HIV research.

Another goal of mine is to try to eliminate the deep depression that many HIV-positive African-American women suffer. This is a major problem, and I would like to bring my best thinking to changing this phenomenon. It doesn’t have to be this way. I don’t feel like I’m really having an impact until we fully address this issue.

Stephen Weiss
I would truly like to see an HIV-free generation, which is becoming the mantra of people working in the area. We have a series of tools that could drive HIV down to almost the status of a rare disease. No one strategy is sufficient, but a combination of strategies would certainly make a difference. These include employing treatment as prevention, such as pre-exposure prophylaxis, circumcision and microbicides, where women have products that they can use that will effectively protect them and their partners. Some of these ideas are on the horizon but haven’t yet materialized. Once the products are licensed and are combined in a comprehensive program, they will certainly play a role in eradicating HIV.

What are your hobbies?

Deborah Jones Weiss
I like to garden, and during the summer I like to quilt.

Stephen Weiss
I like to fish. I have a little old boat but I spend more time fixing it than fishing.

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