Need for social support deters HIV patients from taking their drug ‘cocktails’

Social support may play a small but potentially important role in helping HIV-positive people adhere to the complicated schedules for taking their drug “cocktails” to control the virus that causes AIDS.

A pilot study of primarily indigent black and Puerto Rican men and women at an HIV clinic in New York City suggested that individuals who had the social support they needed were more likely to take their medications. The pilot project was part of a larger study to assess the efficacy of peer support to enhance people’s adherence to their cocktail or Highly Active Antiretroviral Therapy.

“Social support can be as simple as having someone ask if you took your pills today,” said Jane Simoni, the study’s lead investigator and an assistant professor of psychology at the University of Washington.

In the study, patients were asked specifically about their need in the past month for other people (including friends, professionals or those they live with) to bolster their self-efficacy; to listen and understand them; to encourage spiritual avenues for coping; and to provide information, advice and suggestions about their medications.

“Highly Active Antiretroviral Therapy was first touted as a cure for AIDS, but it is difficult to take the medications and to take them at the rate needed to control the virus. But this is not the first time in history people haven’t taken their medicine. Even if we find the perfect vaccine or pill ? a magic bullet ? people still would have to take it. So adherence would still be a problem.”

In the pilot study, self-reported data from 50 people indicated that they took 85 percent of their medications over the previous three days. However, the rates of compliance dropped off sharply when they were questioned more closely about taking the correct number of pills, following dosing schedules and other special instructions.

Previous studies have shown that as many as 60 percent of people taking the antiviral cocktails adhere to their medications less than 90 percent of the time. Other studies indicate HIV-positive people need to take their medicine at least 95 percent of the time to control the AIDS virus.

Simoni said that if a person doesn’t take the medicine consistently, the virus that survives could mutate into resistant strains that are transmittable to others who will then not be able to benefit from the medication.

She added that the daily regime for the cocktail isn’t quite as complicated today as it was when the therapy was first introduced. However, the side effects of the medications remain and people may experience vivid nightmares, headaches, nausea, diarrhea, rashes, altered liver function, changes in their body’s fat distribution and elevated cholesterol levels.

“Consider the psychological impact of telling people about severe, perhaps persistent, side effects. This may scare them from taking their medicine. On the other hand, if you don’t warn people, they may stop immediately or give up once they do experience them,” Simoni said

“It is very difficult to take these medicines for a variety of reasons. It seems helpful to have someone else to help people with HIV to reframe things, take them to the doctor, remind them to take medicines and prepare meals when it would be difficult to eat, let alone cook, food. People get isolated because of the stigma of HIV/AIDS. A lot of people in the Bronx don’t tell other people they have HIV because some pull away from them. People with HIV are more apt to be isolated, so social contact is more important to them.”

The pilot study also showed that people who believe in their ability to take their medication properly usually have greater adherence. However, those subjects who had symptoms of depression were less likely to take their medication and were more likely to need social support. Simoni said depressed people may lack the physical and mental energy to maintain the necessary high levels of adherence, therefore requiring help and support.

The most common reasons given not taking medications were “I just forgot ” by 50 percent of the patients and “I felt worse when I took the pills” by 46 percent.

Co-authors of the paper published in the journal AIDS, Patient Care and STDs are Pamela Frick, a pharmacist at Harborview Medical Center in Seattle; David Lockhart, a UW statistics graduate student; and David Liebovitz, a psychology graduate student at Yeshiva University in New York. The National Institute of Mental Health funded the research.