Women & HIV.
Within days, Ms. Schuster's world flipped upside down. Priorities went from figuring out what's for dinner, checking her daughters' homework and rebuilding her relationship with her husband to worrying about viral loads, CD4 counts and T cells.
She's learned a lot about her disease since her diagnosis on March 14, 2006, but the biggest lesson she learned has nothing to do with the immune system: "I learned that HIV is not a disease of homosexual men and IV drug users," she says.
Indeed. Today, the face of the HIV/AIDS epidemic is increasingly feminine. Worldwide, nearly half of all AIDS cases occur in women, (1) while in the United States, 27 percent of those with AIDS today are women, compared to just seven percent in 1985, (2) Additionally, the annual number of estimated AIDS cases increased 15 percent among women but just one percent among men between 1999 and 2003. (3)
Most infected women are young and black: AIDS is the leading cause of death for African-American women ages 25 to 34 in the U.S. Overall, African Americans make up nearly 60 percent of all AIDS cases in women in the U.S. with a diagnosis rate 25 times that of white women and about four times that of Hispanic women. (22) Hispanic women come next, making up about 20 percent of women with AIDS, while white women account for 16.8 percent. (2)
And, as many people are aware, the epidemic is much worse in other countries. In sub-Saharan Africa, for instance, women now outnumber men as victims of the epidemic, making up almost 60 percent of adults living with HIV and 75 percent of those between the ages of 15 and 24. (1)
The reason? "It goes back to literally centuries of unequal treatment of women," says Karina Danvers, director of the Connecticut AIDS Education and Training Center at the Yale School of Nursing in New Haven, who is HIV positive herself.
"I think HIV/AIDS is one of the many symptoms that come from inequality and society's concept of where women belong." That's one reason she sees for the higher rates of the disease in African-American and Hispanic women in this country: "They've been taught to be even more submissive."
"Submissive" means that many women feel powerless to insist that men use condoms during intercourse; that they can be sexually abused and raped; that they may turn to drugs or prostitution to cope with sexual abuse, poverty and hopelessness. (4) In fact, the majority of infections in women in the U.S. are due to heterosexual transmission (80 percent) or injecting drug use (19 percent). (2)
The Virus in Women
Although AIDS began as a gay men's disease, the virus seems to infect women more easily. In fact, studies find that the virus is two to four times more transmissible to women than to men. (4)
Other gender-related findings on the disease:
* Having another sexually transmitted infection (STI), such as genital herpes, increases the risk of HIV infection up to tenfold, and women are more likely to have an STI than men. (4)
* Using hormonal contraceptives such as injectable progesterone or birth control pills may increase a woman's susceptibility to infection. (5) However, most of the studies of hormonal contraceptives and HIV have been conducted among women at high risk of HIV infection, including sex workers in Africa. It remains unclear whether hormonal contraception increases the risk of acquiring HIV in other populations. Condoms are the only method proved to prevent HIV transmission.
* Adolescent girls are particularly vulnerable to HIV infection. Among the possible reasons: sexual intercourse often results in tiny tears in the genital tract, allowing the virus to enter; (4) their immature genital tracts provide more exposure for the virus; and they're more likely to engage in high-risk activities such as having unprotected sex and multiple sexual partners. They are also less likely to negotiate condom use. (22)
* The risk of HIV infection doubles during and immediately after pregnancy. This may be due to high levels of progesterone, which has been shown to increase susceptibility to infection in primates. (6)
* Women tend to be poorer than men, and HIV infection is linked to poverty. One reason: Women of higher economic status know more about HIV prevention than poorer women. In fact, women without a high school education are 50 percent more likely to be infected with HIV than women who graduated high school, says Ms. Danvers.
Once infected with the virus, women are affected differently than men. For instance, women appear to have lower levels of the virus present in the first several years of infection. (7) No one knows why this is, says Stephen J. Gange, PhD, associate professor in the department of epidemiology at Johns Hopkins Bloomberg School of Public Health.
But researchers are actively searching for answers. Women also have more difficulties accessing care, usually because of economic issues. Plus, they often don't have the time or make the effort to take care of themselves before taking care of others. (4)
"The social and medical aspects of HIV are tied together," says Ms. Danvers. "If you have to take care of the children, the household and everything else, you're going to put yourself last on the list. If you do that, you're not going to do as well."
That could be one reason studies show that just one in four women eligible for the antiretroviral therapy known as HAART--highly active antiretroviral therapy--are on the regimen. (8)
"If their kids have HIV, women will make sure their kids take their medicines, but not themselves," says Ms. Danvers. One woman she knows sent her kids to summer camp instead of using the money to buy a refrigerator for her medications. "She felt her kids' needs came first."
Other issues that may predict why women don't take HAART include a history of sexual abuse, illegal drug use and race, with white women being twice as likely to be on HAART as African-American or Hispanic women. One reason may be that women who have been sexually abused find it difficult to have trusting relationships with their health care professionals, preventing them from sharing personal information. Additionally, a damaged self-image can lead women to ignore their own care. (8)
When researchers in the Women's Interagency HIV Study (WIHS) asked eligible women why they weren't taking HAART, 15 percent said their health care professionals hadn't prescribed it. The rest said they felt "too healthy, wanted to wait, were afraid of side effects or had difficulty taking the medicine." (8)
Breakthrough Medical Therapies: Women's Mixed Blessing
The introduction of the antiretroviral drugs in the mid 1990s changed the outcome of AIDS like nothing else. "We have witnessed one of the most remarkable reversals of fortune in any disease in the history of medicine," noted an editorial in one medical journal in 2004. In 1984, the median survival for someone just diagnosed with AIDS was six months. Today, it is at least 10 years.
"We no longer talk about the pure natural history of HIV/AIDS," says Dr. Gange. "We talk about the treated history of HIV infection."
The therapies have been a mixed blessing for women, however. While they work just as well in women as in men, they seem to cause more frequent and more severe side effects than in men, including diarrhea, nausea, nerve damage, kidney stones and pancreatitis.
Ms. Danvers, who was infected by her ex-husband in 1984 and diagnosed five years later, can definitely relate. "I have diarrhea six times a day, I'm constantly nauseous, and a terrible headache has become part of the background every day. It's not life-threatening, but it's life-affecting."
Even though the AIDS pandemic is more than 20 years old, the stigma attached to the infection remains, particularly for women, says Gina Wingood, ScD, MPH, associate professor of behavioral science and health education at Emory University in Atlanta.
"The stigma that is directed toward women with HIV is different and more damaging than the stigma for men," she says. "When you talk about women living with HIV, you're raising issues of her having had sex with a drug user, being unfaithful to a partner.... We don't have these social gender-stigmatizing issues toward men, even heterosexuals." This, in turn, affects women's self-esteem and makes them less likely to seek HIV testing because of their fears of stigma.
"A lot of people are ignorant about AIDS," says 45-year-old Sharon,* who has been HIV positive since 1994 when she was infected while she worked in a health care facility. "They don't understand it, and they still don't know that this is not a disease where if you hug someone you're going to get infected."
The stigma can be especially strong in certain cultures, like the Hispanic culture. That's one reason for a grassroots social marketing effort called "HIV Stops with Me" (www.HIVstopswithme.org). It aims to reduce the stigma associated with HIV and acknowledge the powerful role HIV-positive people have in ending the epidemic.
One of those people is Maricela Berumen, a 29-year-old Hispanic woman who posted her story on the campaign's Oregon Web site. "At first I kept my HIV status a secret," she wrote. "I didn't want anyone to find out, not even my family. I was afraid of their reaction, afraid of being rejected and feared the indignation if people found out I was infected with the virus (HIV)." She eventually went public, she wrote, because "HIV/AIDS is real and affects all races, ages and genders."
Another major issue for HIV-infected women is whether to tell their children. Sharon still hasn't told her 21- and 17-year-olds. "I'm not sick as long as I keep taking my meds," she says. "I just don't feel my children need to know."
Meanwhile, Karen,* 43, has told three of her five children, ages 29 to 16. "They didn't understand at first," she says, but some family and individual counseling helped. "Now they understand, and they know that I'm not going to die."
She gave birth to two of her children after her diagnosis in 1983, but thanks to the drugs she took during pregnancy and labor (see HIV & Pregnancy on page 6), neither has the virus.
Ask these women what message they'd like to pass on to other women with the virus, and they don't hesitate: "Don't put yourself down. Learn and understand about the disease, find a support group and know that you're not alone."
*Not her real name.
1 The Global Coalition on Women and AIDS. World Health Organization. www.unaids.org.
2 Centers for Disease Control. HIV/AIDS Surveillance Report, 2004 (Vol 16). Atlanta: US Department of health and Human Services, CDC; 2005: 1-46. www.cdc.gov/hiv/topics.
3 Centers for Disease Control. HIV/AIDS Surveillance Report, 2003 (Vol 15). Atlanta: US Department of health and Human Services, CDC; 2005: 1-46. www.cdc.gov/hiv/topics/
4 Turmen T. Gender and HIV/AIDS. Int J Gynaecol Obstet. 2003 Sep; 82(3):411-8.
5 Lavreys L, Baeten JM, Martin HL Jr, et al. Hormonal contraception and risk of HIV-1 acquisition: results of a 10-year prospective study. AIDS. 2004 Mar 5;18(4):695-7.
6 Gray RH, Li X, Kigozi G, et al. Increased risk of incident HIV during pregnancy in Rakai, Uganda: a prospective study. Lancet. 2005 Oct 1;366(9492):1182-8.
7 Anastos K, Gange SJ, Lau B, et al. Association of race and gender with HIV-1 RNA levels and immunologic progression. J Acquir Immune Defic Syndr. 2000 Jul 1;24(3):218-26.
8 Cohen MH, Cook JA, Grey D, Medically eligible women who do not use HAART: the importance of abuse, drug use, and race. Am J Public Health. 2004 Jul;94(7):1147-51.
9 Schooley RT. Starting highly active antiretroviral therapy for HIV infection: is it WIHS to wait? Ann Intern Med. 2004 Feb 17;140(4):305-6.
10 Gandhi M, Aweeka F, Greenblatt RM, Blaschke TF. Sex differences in pharmacokinetics and pharmacodynamics. Annu Rev Pharmacol Toxicol. 2004;44:499-523.
22 Quinn TC, Overbaugh J. HIV/AIDS in women: an expanding epidemic. Science. 2005 Jun 10; 308(5728):1582-3. Review.
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RELATED ARTICLE: The Women's Interagency HIV Study
At the start of the AIDS epidemic in 1983, the National Institutes of Health began a large, multicenter study designed to collect information on the disease, its treatment and its victims--in men. It would be another 10 years, however, before it funded a similar study for women--the Women's Interagency HIV Study (WIHS).
But the researchers in the WIHS have more than made up for lost time. Since it began, it has enrolled more than 2,800 HIV-infected and 950 HIV-uninfected women in six sites around the country, making it the largest study in the United States to focus on HIV infection in women.
One critical finding: The virus has no sex bias. Overall, says Stephen J. Gange, PhD, associate professor in the department of epidemiology at Johns Hopkins Bloomberg School of Public Health and principal investigator of the study, "the general pattern that predicts the occurrence of opportunistic infections and death is pretty similar in men and women." In other words, women get sick and die at the same rate and in the same timeframe as men.
Over the years, the study has shaped the way HIV/AIDS is treated in women. It identified the best time to begin HAART in women, evaluated women's satisfaction with their medical care and discovered that HIV-infected women have increased rates of infection with HPV, the virus that causes cervical cancer. Researchers also learned that hormonal contraceptives have no impact on the effectiveness of HAART, a study responding to concerns raised by a participant of the study's community advisory board.
Ongoing studies are examining the impact of menopause on retroviral therapy and HIV-infected women; the long-term effect of retroviral therapy as women live longer with the disease; changes in blood fats and glucose levels from HIV therapies; and how the virus and treatment impacts women's cardiovascular health.
One of the most impressive aspects of the study, says Dr. Gange, is the long-term commitment of its participants, most of whom are inner-city, low-income, minority women. More than 80 percent have participated more than five years.
One reason for their commitment, he says, is the respect and caring shown by the study's health care professionals. "They've formed a strong link," he notes. "We're saying that we don't view you as research subjects; you are participants in a study, and hopefully we'll be able to show that this research is relevant to your own lives."
To learn more about the WIHS, go to https://www.statepiaps.jhsph.edu/wihs/.