A Beginning: A Focus Group of Older HIV Positive Women
Inside the outpatient clinic building at the University of California, San Francisco (UCSF) Medical Center, on an overcast winter's day, seven women are seated around a table. Participants in a focus group, they are here to discuss their experiences and perspectives as older women living with HIV/AIDS. They also begin to identify ways that they would like to be more supported, whether by family and friends or by health-care providers and community services.
The women observe that they have never before met exclusively with other HIV positive women in their age range, i.e., mid- to late forties and older, and express relief and delight finally to have a forum especially for them. Hulda, in her 50s, says that she has participated in many events in the women's HIV community but that she has longed for a group of her generational peers. She explains that she is far beyond the concerns of pregnancy, vertical transmission, and childcare that are so important to many younger HIV positive women.
"It's about time that there's a group just for older women because we have different issues, like menopause and other body changes, and relating to adult children. I kind of feel left out sitting in a group hearing people talk about what their babies are doing." Hulda also wants to learn about what services and groups are available to older HIV positive women and what medical research says about this group of people with HIV/AIDS.
Some of the women nod their heads. They say they have heard that viral load counts are different for women than for men at similar CD4 cell count levels and states of HIV progression (see BETA, April 1999). They want to know what additional effects aging may have on viral load and possibly other lab tests, and, consequently, how aging may impact the effectiveness of the antiretroviral therapies they are using. Another woman, also in her 50s, talks about body changes like menopause and hearing loss, and describes increased fatigue and various aches and pains. She wonders if some of her symptoms and changes might be related to normal aging, and not to HIV infection.
Aging and HIV/AIDS
In the context of HIV/AIDS, the term "older woman" refers to women over the age of 50. From a geriatrics perspective (where "older adult" tends to mean persons aged 65 or older), 50 may seem rather youthful. Considering that the majority of people who have lost their lives to AIDS have been well under the age of 50, it is clear that this disease profoundly disrupts the normal life cycle process.
As Angela Garcia of Project Inform says, "HIV alters the aging process. There's [normal] physical age and then there's age of living with the disease. I know many young women who have been living with the virus for 12 to 15 years who say they feel old." While more people with HIV are now living into their 50s and beyond, since the beginning of the epidemic a constant but small percentage of people aged 50 or over have lived with HIV disease.
According to the Centers for Disease Control and Prevention (CDC), people aged 50 or older account for 10% of all cases of HIV since 1981. By the beginning of 1999, 72,161 AIDS cases in people aged 50 or older had been reported to the CDC (of a total of 688,200 cumulative cases). Among women with AIDS, 25% are over the age of 40.
While the CDC has been tracking the numbers of older people with HIV/AIDS since 1981, the numbers of older HIV positive women have probably been underreported and underestimated. A study published in 1995 that involved elderly hospital patients in a high-risk community revealed that 8.9% of women aged 60-79 who had died within the year of the study were actually HIV positive, even though none of them was identified as such. This stunning oversight may be due in part to physician neglect. In another report, a survey of Dallas primary care physicians concluded that most "rarely or never ask patients over 50 about HIV risk factors, while only seven percent don't ask patients under 30."
At the focus group, Dorothy, an HIV community activist in her late 40s, cites societal ageism and sexism as an explanation for the invisibility of the older HIV positive woman. "Older women's voices aren't heard in society, but they should be. Women have unsafe sex and get sick, and then get overlooked when it comes to getting tested for the virus." In addition to HIV that simply goes unrecognized, shame and isolation seem to play roles in keeping these HIV positive women invisible and untreated.
Another focus group participant, an African-American woman who became infected from a needlestick while rummaging through a trash bin, says, "HIV is seen as a young, gay, white disease that's gotten through needles or unprotected sex. It's hard for an older woman to disclose her HIV status because she's afraid that people will label her a drug user or promiscuous [person]."
Jane Fowler, co-chair of the National Association on HIV Over 50 (NAHOF) (see Local and National Resources for Older HIV Positive Women for more information), believes that while shame and isolation can affect all people with HIV, older people experience these emotions more intensely. She has observed that older people with HIV/AIDS face a sort of double stigma, related to ageism and to infection with a sexually transmitted-or illicit drug-related-disease. Fowler, who is 64, has herself been HIV positive for 14 years. "Older HIV positive women are more isolated and ignored than most other people with HIV. [For one thing,] nobody thinks we're still sexually active...and people in my generation didn't talk about sex."
Fowler also emphasizes the need for rigorous HIV prevention education among older adults. "Older women were educated differently about condoms; they think condoms are meant to be used for birth control, not to prevent HIV or STDs [sexually transmitted diseases]. Many older women need to be re-educated about using condoms to prevent diseases, rather than just as a method of birth control."
Therapist Penny Chernow, MFCC, started the first support groups for older HIV positive women in the San Francisco Bay Area in 1997 at a retreat sponsored by the Oakland-based Women Organized to Respond to Life-threatening Diseases (WORLD). According to Chernow, "Shame and isolation have been the recurrent themes in my groups. These women came of age before the 'sexual revolution' of the '70s. They feel that, as older women who may be seen by society as asexual, they are 'not supposed' to have HIV." Chernow reports that most women who attended her groups were infected by their sexual partners rather than through IV drug use. A typical case was a woman whose husband acquired HIV from a contaminated blood transfusion for open-heart surgery, and then sexually transmitted the virus to his wife.
Loss of sexuality has been another theme among the more mature women with whom Chernow has worked. While younger women, as well as other people with HIV, may feel cut off sexually, older women may be especially vulnerable to this sort of doubt as a result of their positive HIV status in combination with issues related to aging. Many older positive women assume they will never have another sexual partner, "and that makes them feel very lonely."
Holly, another woman in the focus group, speaks to this issue. "I don't feel I'm worthy of a relationship due to my HIV status. But I try not to let myself feel lonely-after all, I've got friends and I'm living with, not dying from, the virus. And now I'm here at this focus group. I've been in the closet about my diagnosis for years but now I'm starting to peek out the door."
Resources for Older Positive Women
As people age and change, so do their priorities and issues; the way women deal with HIV over time changes too. Joining a support group is one way for HIV positive women to feel more at ease and, through discussions with their peers about their experiences, to become more connected to other women like them. In the San Francisco Bay Area, however, there has not been a regular group until now, and there are few other venues for older women to meet one another. Jane Fowler recognized this void, which became a catalyst for her own activism. "I became an activist because I didn't know any older HIV positive people, women or men. There was nothing out there. So it became my mission to educate every woman I could about HIV prevention and, for those already infected, to reduce their sense of isolation." Her efforts resulted in an annual conference dedicated to older people with HIV/AIDS (see Local and National Resources for Older HIV
One of the oldest organizations dedicated to older HIV positive people is the New York Association on HIV Over 50. According to co-chair Kathy Nokes, RN, the Association started in 1991. Nokes is particularly concerned about the sudden popularity of sildenafil (Viagra) and its possible effect on the rate of HIV transmission to women. (Sildenafil is a prescription medication for erectile dysfunction disorder.) Nokes describes men who have been unable to have satisfying sexual intercourse with their female partners who now have access to sildenafil. "All of a sudden, the man is interested in sex again. If his partner is not interested, he may seek sex outside the relationship. When he does eventually have sex with his primary partner, he may have acquired HIV and thus put his partner at risk." Nokes would like to see more responsible advertising of sildenafil, including frank discussion about and emphasis on the importance of condom use.
Perspectives on Medical Treatment
Support groups, conferences, and advocacy organizations signal the increasing visibility of older women with HIV/AIDS. Yet, so far, few of the medical issues facing these women have been explored. One thing is clear, however: older women are particularly at risk for HIV infection through sexual transmission. Normal aging causes a decrease in vaginal lubrication and thinning of vaginal walls, both of which make it easier for the virus to enter the bloodstream during sexual intercourse.
Ruth Greenblatt, MD, is director of the Women's Specialty Clinic at UCSF, a primary care clinic for women with HIV/AIDS, and the principal investigator of the Northern California Women's Interagency HIV Study (WIHS). Dr. Greenblatt readily admits that very little medical research on older HIV positive women has been conducted. "Age itself is a risk factor for more rapid progression in all older people with HIV, but we don't know how it works."
In a study published in 1996 in the Journal of General Medicine, HIV positive people over 50, compared to younger people, had more frequent comorbid (coexisting) disease and neurological problems as well as more admissions to the intensive care unit. Older hospitalized patients also had a greater in-hospital mortality rate than their younger counterparts. Unfortunately, these data were not analyzed by gender.
A study published in 1997 in the Mechanisms of Aging and Development found that not only do older HIV positive people progress to AIDS more rapidly than younger people, but they also die more quickly after developing an AIDS-defining illness. The authors suggest that more rapid progression may be due to "an inability of older persons to replace the functional T-cells that are being destroyed." They call for "more aggressive antiretroviral therapies as well as continued research to identify and preserve immune system elements that control the virus."
Particular psychosocial factors also bear on the way women receive medical care for HIV disease. Hulda, from the focus group, believes that female social patterns cause women to delay seeking medical help for themselves, which, in turn, causes older women to progress to AIDS and die more rapidly than younger people with HIV. [Ed. Note: a large study by the Terry Beirn Community Programs for Clinical Research on AIDS (CPCRA) reported that women who received medical care as early in the course of HIV disease, as frequently, and comprehensively as men lived as long as men, but that women often delayed seeking treatment until they were very ill. (See "Gender & HIV" in BETA, March 1995, page 43.)
As Hulda says, "Women are raised to be caregivers and older women have been through the cycle longer. We have brought up our kids or have had to care for a partner or family members and very seldom care for ourselves. It's harder to care for yourself when you have been conditioned for so many years to care for others."
Depression may be another challenge facing the older HIV positive woman. Depression itself may reduce an individual's energy level and may result in restrictions in social routines and reductions in daily activities. An additional loss of health due to progressive HIV disease may increase the severity of depression in an older woman. Dr. Greenblatt reports that the WIHS study is looking at the relationship of HIV disease and depression to age in the women in her study. (The data will be available in the next few years.)
The WIHS study is also looking at hormone replacement therapy, menopause, and dementia among aging HIV positive women. "Menopause does affect the immune system; in lupus, for example, it is beneficial. We don't know yet how menopause affects women with HIV," says Dr. Greenblatt. Results of one study indicate that hormone replacement therapy in postmenopausal women has benefits for HIV dementia.
Drug Side Effects or Normal Aging?
Many older women are taking powerful antiretroviral medication to treat their disease. Managing drug side effects may be difficult for persons with HIV of any age. For older women, Jane Fowler believes that the worst antiretroviral side effect is body fat redistribution (BFR). (For a comprehensive article on BFR, see "Body Fat Changes: More than Lipodystrophy" in BETA, January 1999.)
BFR, sometimes called lipodystrophy, is a condition that has been associated with some of the protease inhibitors and possibly other antiretroviral drugs, as well as with HIV itself. In BFR, body fat may seem to vanish from some areas like the arms, legs, and face, while accumulating in other areas, like the trunk ("protease paunch"), back of the neck ("buffalo hump" or dorsocervical fat pad), or the breasts.
"As aging women, our self-image and physical attractiveness is hard enough to maintain without having to deal with body shape changes and problems of fat redistribution." Fowler, who developed the fairly common side effect of increased abdominal girth, says that "people have actually come up to me and asked me if I was pregnant, which I found insulting."
Fowler cites a further challenge: the relative absence of any research on the interaction of antiretrovirals and other medications commonly used by aging women, particularly hormone replacement therapy. (Package inserts of several antiretroviral drugs discuss drug interactions with oral contraceptives, but not female hormone replacement.) Given this lack of conclusive information, each woman should consult with her physician to help decide what is best for her. In Fowler's case, she decided to start hormone replacement therapy; she hopes that research efforts will soon shed light on the issue of combining it with her anti-HIV medications.
Some of the women left the focus group having spoken publicly about their HIV status for the first time. Many say they feel a strength that comes from connecting with someone who shares their experience. Since the focus group meeting, a new San Francisco-based group solely for older women with HIV has formed. Plans for the group include meetings twice a month on an ongoing basis and guest lectures presented by members of the medical and pharmaceutical communities. Guests will present news and trends in research and treatment that could benefit the way the women approach managing HIV as they age.
The group is open to all HIV positive women who feel that they are dealing with issues related to aging (most likely, women in their mid-40s and older). For more information, call Claire Siverson at 415-476-2417 (also, see Local and National Resources for Older HIV Positive Women).
Claire Siverson, LCSW, is a clinical social worker at the Women's Specialty Clinic at UCSF, where she works with women living with HIV/AIDS who come to the clinic for their primary medical care. Siverson is also the president of the San Francisco-based Coalition for Positive Families with Children (CPFC) and has a private psychotherapy practice in San Francisco.
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