Studying Barriers to Health Care to Help Women with HIV

Dr. Seble Kassaye
Georgetown infectious diseases and epidemiology expert Seble G. Kassaye, MD, MS, is the principal investigator of the DC branch of the national Women’s Interagency HIV Study, which tracks women infected with HIV.

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(June 12, 2019) — Seble G. Kassaye, MD, MS, can’t help but see parallels between HIV-positive African American women in the DC area and conditions surrounding rising rates of HIV infection as it swept through Ethiopia, the country where she was born and raised until a teenager.

The infection in Ethiopia occurred largely in urban settings, where compared to men, three times as many vulnerable women, living below the poverty line, were infected. The primary route of transmission was heterosexual contact, likely by men who didn’t know they were infected or who did not disclose the infection.

“HIV affected the whole social structure of the country,” says Kassaye, an infectious diseases and epidemiology expert. Today, about 1.2 million Ethiopians are infected — an adult prevalence rate of 2.4%.

In the U.S., African Americans account for a higher proportion of new HIV diagnoses and people living with HIV compared to other races and ethnicities. In 2017, African Americans made up 13% of the U.S. population but 43% of the 38,739 new HIV diagnoses, according to the U.S. Centers for Disease Control and Prevention.

But Washington has its own epidemic of HIV, with some of the highest rates of infection in the U.S. With an infection prevalence of 4.3%, African Americans are hardest-hit. While African Americans make up less than half of DC’s population, they represent three-quarters of people living with HIV. African Americans also account for the majority (89% in 2010) of deaths among people who are HIV-positive in DC.

In the U.S. and Washington, the majority of women with HIV are African American. Kassaye says that while much progress has been made in diagnosis and treatment, a substantial number of vulnerable women have found an inadequate social structure that makes it difficult to take daily medicine to suppress their infection.

Kassaye didn’t know about these parallels until she focused on the local picture of HIV infection in African American women in DC as part of the national Women’s Interagency HIV Study (WIHS). In 2016, she became the principal investigator of the DC branch of WIHS, which has tracked thousands of infected women since the study opened in 1994.

Struggles of Daily Living

Kassaye was in Ethiopia when HIV struck in 1986 but she was already aware of the U.S. epidemic by reading about the spread of the infection in Time magazine and other news outlets. She moved to the U.S. to attend high school during the early years of the HIV epidemic in Ethiopia. When she returned for a visit after two years, she learned of the exponential growth of the local epidemic and the difficulties the country had in providing medical and social support.

Kassaye went on to college at Bryn Mawr, earned her medical degree at the University of Chicago, completed her internship and residency at Mount Sinai Medical Center, and then moved to Stanford University, where she completed her infectious diseases fellowship and earned an MS in epidemiology. She moved back to the East Coast and came to Georgetown, where she has focused on infectious diseases and HIV. Her motivation has been to decrease the impact of HIV on women, children and their families, in the U.S. and globally.

“I am interested in increasing equity to access to care by understanding the barriers people experience in receiving the care they need,” she says.

Results of her work, and a team of others from four WIHS sites around the country, were recently published in JAMA Open Network. Kassaye is the study’s lead investigator, and GUMC’s Michael Plankey, PhD, is the study’s senior researcher.

The picture researchers painted is that while many women have been successful at keeping up with preventive treatment, many struggle with issues of daily living that can make it difficult to take a pill to keep HIV at bay.

Challenges such as mental health, unstable housing and lack of social support constitute ongoing barriers to effective and sustained viral suppression, Kassaye says. “Survival is a priority over putting a pill in your mouth for a number of our participants, and that is the public health challenge we must address.

“The truth of their lives is a lot less rosy than a few lines of statistics in a summary report can reveal,” she adds. “When you see a grandmother, her daughter and her granddaughter come into the clinic for checkups, you realize there is much more we need to know.”

The Granular Detail

In this study, the researchers took a longitudinal look at how well each participant kept their virus in check, and why some had trouble doing so. Each person was interviewed and had a blood draw every six months to establish viral levels, indicating whether the virus was well controlled or uncontrolled, a condition called viremia.

The researchers found that over 23 years of viral levels, three patterns or “trajectories” were present: 29% were at a low probability for viremia, 39% were at intermediate probability and 32% were at high probability.

These superseded the usual cross-sectional or short-term analyses that are often provided to capture viremia outcomes at the population level. More recently, between 2015 and 2017, 71% of women achieved sustained viral suppression, including 35% of the high probability of viremia group.

“So, the big picture is that 71% of the women achieved viral suppression, but the granular detail tells us that while some women are doing very well, others are still struggling to get to viral suppression,” says Kassaye.

Generations of Women Affected

While today’s HIV treatment is much less toxic than it used to be, and drug therapy is now suggested for anyone who is infected — and are therefore in much greater use — the barriers to daily therapy are real, she says. The researchers found that women in the high viremia group were more likely to report depressive symptoms (54%), have higher levels of current drug (41%) and alcohol use (14%), be less likely to have stable housing (66%) and were more likely to die (39%).

“Just in DC, we see that the public health issues surrounding HIV can be endemic. I have seen women with HIV who do not have any support, but if that person develops cancer, there will be a roomful of people coming to the clinic with her,” Kassaye says.

An answer to reaching universal treatment and viral suppression will require medical coverage to access treatment services. Beyond this basic requirement, wraparound services are needed to ensure adequate housing, mental health services, as well as drug treatment programs to effectively address social and mental barriers to long-term adherence to treatment, she says.

In general, both the U.S. and Ethiopia have made tremendous strides in the use of drugs for treatment and to prevent the spread of HIV, yet important challenges remain, Kassaye says. “I believe the barriers to effective HIV control through social support is as important a topic of discussion in the U.S. as in Ethiopia. We clearly have more in the way of medical resources here in the U.S., but that does not replace the need for additional services and outreach to keep women engaged in care and treatment.”

Renee Twombly
GUMC Communications