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Helping the vulnerable and the marginalized

Understanding the social factors that impact HIV prevention and treatment

man with HIV laying in bed

Photo by Vittore Buzzi on Unsplash

In 1981 the Centers for Disease Control and Prevention published an article in its Morbidity and Mortality Weekly Report, describing cases of a rare lung infection. It was the first official reporting of what would later become known as the AIDS epidemic.

When the mysterious illness first emerged as a public health threat, scientists and health officials knew they had work to do. The primary issues to address were: Identify the disease; determine how it was transmitted; produce treatments; halt its spread. By the late 1980s, the first HIV tests and antiretroviral treatments had been developed, but according to the CDC, by 1992 more than 180,000 people had died of AIDS. The current antiretroviral therapies, when used effectively, now allow people living with HIV to lead long and healthy lives. The treatment also helps prevent transmission.

Despite the progress, HIV remains a significant public health threat. Roughly 37 million people worldwide were living with HIV in 2017, the latest figures available. An estimated 1.8 million people were newly infected with HIV the same year, about 5,000 infections per day, according to the Joint United Nations Programme on HIV and AIDS.

Those at most risk of contracting the disease are often people marginalized in society due to their gender identity, sexual orientation, race or ethnicity, economic status, lack of education or general stigma surrounding the disease.

Taking prevention, diagnosis and treatment programs to these vulnerable populations presents a complicated public health challenge that isn’t easily solved. But it’s a challenge that researchers in Oregon State University’s College of Public Health and Human Sciences are taking head on.

“When I started in this field, getting HIV was a death sentence. We’ve made huge advances in prevention, diagnosis and treatment,” says Peggy Dolcini, a professor in the School of Social and Behavioral Health Sciences. “But this epidemic is very complex. We’ve come a long way, but there is still quite a lot of work to do.”

Safe space

Today, much of OSU’s research around HIV and AIDS focuses on the social and behavioral factors that lead to sexual risk and social vulnerability and the factors that help or hinder testing and treatment in the U.S. and around the world, with particular emphasis on marginalized populations.

“There’s a social context that makes people vulnerable to HIV,” says Jonathan Garcia, an assistant professor and one of several OSU researchers studying social factors related to sexual health and HIV and AIDS. “All of us are addressing the vulnerabilities of these marginalized populations in some way in our work.”

Jonathan, a native of Medellin, Colombia, who lived for years in New York City before joining Oregon State in 2015, studies how social experiences influence health. His work explores community-led approaches to social inclusion, HIV prevention and Hepatitis C treatment access — especially among Latinos and the lesbian, gay, bisexual and transgender populations.

When people are marginalized – because of their gender, sexual identity, race or ethnicity, economic status or because they are houseless or live in a rural area – they can become socially isolated, which only serves to increase their exposure. Finding ways to create a sense of community is one meaningful way to begin addressing those vulnerabilities.

Jonathan has studied the role safe spaces play in community-based HIV prevention efforts in New York. He also works with groups in Brazil, Peru and India on a range of HIV, AIDS and sexual health research. In Oregon he is currently working on a new project supported by a grant from the Robert Wood Johnson Foundation.

Borrowing an idea from a successful HIV education campaign in Brazil, Jonathan is developing an intervention using the framework of a Latin American “telenovela” or soap opera. The project will use telenovelas to teach Latino youth in Oregon how to be allies for their lesbian, gay, bisexual and transgender peers.

“Knowing how to be good peers and allies to people who are vulnerable is important for our young people,” he says. “Having a society that cares for the most vulnerable among them is valuable to everyone. Vulnerabilities can shift and change over time; who is to say we won’t all be vulnerable at some point in our life?”

Bottlenecks

Peggy and her husband, Joseph Catania, a professor in the School of Social and Behavioral Sciences, first met as young researchers working in San Francisco in the early days of the AIDS crisis. Joseph was an investigator with the University of California, San Francisco’s Center for AIDS Prevention Studies and remains a professor emeritus there. Peggy later joined the center as well.

They relocated to OSU in 2006 because they were looking for a place to live that was more conducive to raising a family. At Oregon State, they have frequently worked together on a range of projects, but their primary focus has been on the dissemination and implementation of important research findings.

Almost 80 percent of health care innovations discovered through research never get put into practice in real-world settings. One of the bottlenecks in the diagnosis and treatment of HIV is simply getting people tested. For example, African-American men who have sex with other men are among the least likely to seek testing at a clinic or doctor’s office, Joseph says.

The introduction of the at-home oral HIV test was seen as a way to address the stigma that kept these men and others from seeking testing. But the test is expensive, averaging about $40, which can be a barrier for many people already struggling to get by.

There’s another question: Once people acquire an at-home test, can they use it correctly? Joseph is the lead investigator, and Peggy is a co-investigator on two studies examining aspects of that question, with an emphasis on groups that may benefit from the test but may also have challenges performing the test. The research is conducted under the auspices of OSU’s Hallie Ford Center for Healthy Children and Families, where Peggy leads the youth and young adult research core.

With funding from the National Institute of Mental Health, they are examining whether young African-American men in low-income areas of Chicago can effectively use at-home tests as provided off the shelf.

In a study funded by the National Institute of Child and Human Development, the researchers developed a randomized controlled trial to see if an instructional video and pictorial book could help high-risk youth in Tanzania correctly use the kit. The hope is that the additional materials will help make the packages, which are only labeled in English and Spanish, more accessible to a population that is mostly illiterate.

Peggy and Joseph are still analyzing results from both studies, but early indications show the kits can be improved for more accurate use by a wider portion of the population. The researchers are now seeking funding for a new study that would look at innovative ways to get tests to those most at risk of contracting HIV. In cities such as Portland, where the prevalence of HIV is low and the at-risk population is widely spread across the city, finding those people can be difficult.

“A recent pilot study showed that five times as many testing kits are accessed from LGBTQ friendly businesses than at clinics,” Peggy says. “How can we make kits available at places where people are most comfortable?”

Two to tango

Distinguished Professor S. Marie Harvey built her career studying the sexual and reproductive health of vulnerable populations, particularly Latina and African-American women who face higher rates of unintended pregnancy and sexually transmitted infections, including HIV.

“My early focus was on contraception and unintended pregnancy prevention,” says Marie, associate dean for research in the college. As HIV and AIDS emerged, her work expanded to include sexually transmitted infection prevention.

Marie’s body of research examines how gender roles and relationship dynamics affect decision-making regarding sexual behavior, particularly among heterosexual Latinos in urban and rural areas. She has pioneered the development of sexual health studies and interventions to include both men and women and to look at couple dynamics.

“We think of people as autonomous, but in a sexual relationship, there are very few things you do alone,” Marie says. “It’s so obvious but we missed it for so many years.”

Some of her most recent work examines how couples make decisions about the use of condoms, which are unique in their ability to protect against both unintended pregnancy and sexually transmitted infections, including HIV.

“It’s a lot harder for a woman to protect herself from HIV and other sexually transmitted infections if her partner doesn’t wear a condom. It takes two to tango,” Marie says. Men generally have control of the use of condoms, but women are the ones facing the unintended consequences of forgoing their use. The issue becomes how couples negotiate those decisions.

“How people behave and engage in risky behavior is linked to their race, class, gender, religion, sexual partner and more,” she says. “You have to understand every population to help tailor public health programs and interventions that reach them where they are.”

This article originally appeared in Terra magazine.