Researcher studies how patients stick to treatment plans

A UMKC School of Medicine researcher is working to understand why people diagnosed with HIV may not stick with their treatment.

An estimated 1.2 million Americans live with HIV infection. The disease is treated with antiretroviral therapy, a combination of medicines that reduces the amount of HIV in the bloodstream, which helps the body fight off infections and cancers. It also reduces the risk of transmitting the virus.

“We’ve gotten to the point where in some respects being HIV-positive is a chronic condition,” said Mary Gerkovich, Ph.D., associate professor of biomedical and health informatics. “We now have HIV-positive patients who are developing all the naturally occurring aging conditions.”

Gerkovich works with the Infectious Diseases Clinic at Truman Medical Center Hospital Hill to identify participants in her research. “How do you get people to make behavior changes and then stick with them, is the question I keep going back to,” said Gerkovich, who collaborates with colleagues in the departments of Biomedical and Health Informatics, Medicine and Psychology.

According to Gerkovich, people who are diagnosed with a chronic condition first have to come to terms with it. “Often when people get a diagnosis that’s a serious diagnosis, they can sometimes shut down and say, ‘I can’t deal with this right now. I’m not willing to acknowledge it and accept it,’” she said.

In one instance, Gerkovich interviewed a patient who was diagnosed with cancer around the time he found out he was HIV-positive. “He spent a lot of time just trying to figure out what in the heck is going on in terms of, ‘What can I do and what can I look forward to?’” she said. “It took him a while to get to the point where he was able to say, ‘OK, I’m now ready to do something to fight these or address these.’”

Helping patients with HIV find reasons to stay healthy increases the likelihood they will follow the prescribed treatment, Gerkovich said, noting that many chronic conditions require people to take medications for the rest of their lives. “You can get to a point where you’re just sick and tired of it,” she said. “Every time you take these pills, it reminds you that you have a condition that you’re having to deal with.”

Peer systems may also help patients find the motivation they need to stay on track. Gerkovich said that in her studies, patients have talked about how important it was to see someone else with the same condition living well. It allowed them to see their diagnosis was not a death sentence.

Still, the stigma around HIV weighs on patients. In one study, Gerkovich and colleagues interviewed hospitalized patients who had not been receiving care for their HIV status. Some said they did not take their medication or failed to keep clinic appointments to avoid questions from loved ones and employers.

Mental health issues and substance abuse also present obstacles to treatment. “They may fall out of care because they’re not managing their life,” Gerkovich said.

One positive development in HIV care has been the advancement of drug treatments. Some patients may need to take only one pill once a day. “The medications now have much reduced side effects,” Gerkovich said. “They’re much easier to take in terms of the timing and the regimen.”

Gerkovch’s HIV research is not limited to patients at Truman Medical Center. Along with Kathy Goggin, Ph.D., professor of pediatrics and director of health services and outcomes research at Children’s Mercy Kansas City, and Karen Williams, Ph.D., Olson Professor of Biomedical and Health Informatics, she contributed to a study to evaluate the safety of a plant widely used in South Africa to treat people infected with HIV. The study appeared in the journal PLOS One earlier this year.