HAART is no panacea for psychosocial problems
Study disputes assumptions and expectations
It was only logical for clinicians to assume that once highly active antiretroviral treatment (HAART) became widely available, then HIV-positive men and women would improve mentally and emotionally as well as physically.
But one new study has found that the psycho-social health of HIV-infected women in a New York City cohort has not improved.1
"When we first conceptualized this study about five or six years ago, there were a lot of assumptions that were going unexamined — such as that now that there’s HAART and people are living longer and AIDS is redefined as a chronic illness, then it’s not as distressing an experience," says Karolynn Siegel, PhD.
Siegel is a professor of sociomedical sciences at the Center for the Psychosocial Study of Health and Illness at Columbia University in New York City.
After studying a group of women for whom there were data for 1994 to 1996, before HAART was readily available, Siegel and co-investigators found that the conventional wisdom was incorrect: There was no statistically significant difference in the psychosocial health of the women pre-HAART compared with the women post-HAART, she says.
There are a number of possibilities for these findings, Siegel adds.
"One is that most of these women are living in situations where they have many significant life stressors: violence, poverty, history of drug abuse, and other health problems associated with their socioeconomic status," she explains. "Many don’t even consider HIV infection the most salient or pressing problem they have to deal with."
So it’s possible that while an HIV-infected woman’s health is better and her outlook is better, the other problems are bigger issues that have a greater impact on her sense of well-being, Siegel adds.
The women who participated in the 2000-2002 study included African American, white, and Puerto Rican women in equal proportions to the group studied from 1994 to 1996.1
Another possibility noted in the study is that HAART has not met the high expectations of the women studied.
Side effects can decrease quality of life
While the medications have improved health and longevity, they have compromised some patients’ quality of life through side effects, and some women may be experiencing treatment failure or treatment fatigue, Siegel notes.
"So they’re not the magic bullet that you’d think," she continues. "Sure, the women will live longer; but some women will succumb to AIDS at some point, so they still expect this to be a disease that will take their lives."
Uncertainty creates a great deal of stress, and HIV-infected women continue to live with uncertainty. There’s the uncertainty of whether they will be able to tolerate side effects from the medications that are potent against HIV.
There’s the uncertainty about whether they will be able to continue to find new drugs to maintain their health as the old ones begin to fail. And the uncertainty about whether they will be alive to see their children get married, Siegel points out.
"The women who had children tried be more hopeful about the future, although they didn’t always succeed," she says. "Many had a goal of being around to see their child meet a milestone, whether it’s a confirmation or graduation from high school."
And most of the women in the study reported that they feel as though they have a lot of resources available, but they say the disease still is very stigmatizing and contributes to their shame and depression, Siegel explains.
"They are living a double life and are afraid of rejection," she points out. "Some have been rejected by family and other people and have a loss of self-esteem, depression, and many become isolated."
To maintain an authentic relationship, a woman cannot keep a major secret, but many of the HIV-infected women were unwilling out of a fear of rejection to disclose their HIV status, Siegel adds.
The take-home message for clinicians and public health officials is that it’s not enough to assume that once HIV-infected people are put on HAART, all of their psychosocial problems will suddenly disappear, she says.
"If it is the larger sociocultural context in which these women live, that is the big problem, then we have to chip away at issues of poverty, homelessness, and drug abuse," Siegel explains.
She says her fear is that because of HAART, resources once earmarked for the life conditions of HIV-infected patients are being shifted into other directions.
The data from her research and similar studies show those resources still need to be used to help patients improve their housing and lifestyle situations, Siegel says.
"The money needs to be there for the psychosocial support for women," she adds.
1. Siegel K, Karus D, Dean L. Psychosocial characteristics of New York City HIV-infected women before and after the advent of HAART. Am J Pub Health 2004; 94(7):1,127-1,132.