The issue is crucial, says Georgetown University Medical Center HIV specialist Mary Young, MD, because by 2015, half of people in the United States living with HIV will be age 50 or older.
In addition to the typical effects of aging, individuals who are infected may develop other disorders that are related to treatment, adds Young, principal investigator of the Washington Metropolitan Women’s Interagency HIV Study (WIHS).
“There is very little known about the general resiliency of HIV-infected patients who have aged and have likely developed other disorders,” she says.
So Young, and Lakshmi Goparaju, PhD, of Georgetown’s Infectious Diseases Division, turned to a group of women they have been studying for years through the NIH-funded WIHS, the largest prospective, observational study of HIV-infected and at-risk non-infected women. The national study began enrollment in 1994 and more than 300 women still remain active in the Washington metropolitan region. Participants are seen every six months with extensive interviews and sample collections.
In 2010, African-American women made up 14 percent of the population of U.S. women, but accounted for nearly 64 percent of new HIV infections occurring among all women in the country.
In light of this disproportionate impact, Lari Warren-Jeanpiere, PhD, and Goparaju set out to examine how this population has coped with the disease and its treatment over the years, along with collaborators Pilar Hamilton, a research project assistant at GUMC, and Heather Dillaway, PhD, associate professor at Wayne State University. The researchers convened five focus groups with 23 HIV-positive African-American women aged 52 to 65.
They recently published their study in AIDS Patient Care and STDs. What they learned from the women surprised them.
“HIV management is not burdensome to these women,” Goparaju says. “We are surprised because everyone has looked on HIV as this complicated thing to live with.
“The women we studied took responsibility, they use their medications,” she says.
But they also found that the participants are having a hard time keeping on top of the other chronic conditions they have developed, Goparaju says. Only one of the 23 women had no illnesses other than HIV.
A Dreaded Wake-up Call
Others, like “Bea”—who requested that her real name not be used, say they have too many other conditions.
In some ways, an HIV diagnosis was the best thing to happen to Bea, a D.C. resident who is now 58. But it took her a year to come to that realization.
When she was diagnosed in 1986, she couldn’t believe it. She had asked to be tested, under the assumption that the HIV/AIDS was a disease that mainly struck homosexual white men.
“I didn’t know that I had two big risk factors: IV drug use and sex with an infected man,” Bea says.
The man was her husband, who has since died of AIDS and from whom Bea was already separated when she learned her diagnosis. She was angry and began to fight for her life. For the last 27 years, she has taken her pills faithfully, and she has also become sober and drug-free.
“I did a whole 180-degree turn. I am scared that if I come off my drugs, I will die,” she says.
Body Letting Her Down
Despite her longstanding commitment to protecting her health, Bea says her body is now letting her down.
The list of ailments she faces is long and growing: diabetes, Graves’ disease, osteoporosis, hepatitis C and B, emphysema, chronic obstructive pulmonary disease, a bad back and sleep apnea, among others.
In addition to the drugs she takes each day for HIV, Bea takes “countless” shots, inhalants and a rainbow of colored pills every day.
“HIV/AIDS isn’t going to kill me. It will be something crazy like falling down the stairs with my bad bones, or all the other stuff I have going on,” she says.
Bea says she is “blessed” in one important way— her second husband helps her manage her health.
Commitment to Health
The study bears out Bea’s experience with her second husband; the researchers found that romantic relationships and social responsibilities motivated women to stay healthy by managing their HIV.
In contrast, stressors including financial worries and a heavy pill burden negatively affected adherence to HIV regimens, Goparaju says. Some women were just tired of taking their pills, she says.
“Some of the women expressed a sense of betrayal—they were so good about taking care of their HIV and now they have all these other conditions that they are going to have to deal with—which is emotionally very difficult,” Young says. “We need to streamline their care and reduce their medications when possible.”
“These brave women are teaching us what it is like to grow old with HIV, and what the problems and challenges are, and for that we are grateful,” she says.
The research described was conducted by WIHS, which is funded by the National Institute of Allergy and Infectious Diseases (UO1-AI-34994), the National Cancer Institute, the National Institute on Drug Abuse and Eunice Kennedy Shriver National Institute of Child Health and Human Development. The investigators’ publication was made possible by supplemental funds from the National Institute of Allergy and Infectious Diseases (5U01AI034994-18S).
By Renee Twombly