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HIV Infection in Women:
Still Untreated, Still Deadly

July/August 1997

A note from The field of medicine is constantly evolving. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

HIV infection is now the leading cause of death for women 25 to 44 years old in New York City. The same is true for 25- to 44-year-old African-American women across the United States. At the same time, deaths among all persons with AIDS substantially decreased last year, both in New York City and nationally. (According to the Centers for Disease Control and Prevention [CDC], the overall national decrease was 19% for the first nine months of 1996 compared to the same period in 1995.) This decline in AIDS deaths is believed to reflect the introduction of more powerful HIV therapies and better management and prevention of opportunistic infections.

Despite the unprecedented improvement in the overall death rate, the number of AIDS deaths did not decrease substantially for women.

AIDS is growing fastest among women, but throughout the epidemic, women with HIV/AIDS have had shorter survival times than men (Lemp, 1992; Rothenberg, 1991). This imbalance is likely due to complex psychosocial determinants related to women's role as caretaker of the family, their relative poverty, and the paternalism, if not downright hostility, with which the medical system approaches women's problems -- the inadequate investigation and diagnosis of HIV/AIDS in women being typical of the uncomfortable relationship medicine has with women. These factors lead to poor access to satisfactory care and the fruits of medical progress. Burdensome lifestyle factors furthermore make it difficult to adhere to treatment instructions when women do obtain adequate medical management.

The National Conference on Women and HIV (May 4-7, 1997; Pasadena, California), explored both women's use of current HIV therapies and their utilization of health services in general. Angela Powell, from the U.S. Health Resources and Services Administration, reported on national data regarding the experiences of women with HIV/AIDS who receive services under the Ryan White Care Act. She concluded that "women with HIV/AIDS have special needs and face unique barriers to services. They have primary care and support services needs different from those of men."


A Medical Gender Gap

As reported at the conference, the records of the Seattle Spectrum of HIV-Related Diseases Study show that fewer women than men (46% vs. 61%) had quantitative HIV viral load data in their medical records but nearly 98% of both groups had CD4 data. Among those prescribed antiretroviral therapy, 29% of the men and 18% of the women were taking protease inhibitors, although similar numbers (54% vs. 57%) were on some type of HIV therapy. In Los Angeles County, an analysis of prescribing practices revealed that fewer than 44% of women with AIDS are receiving protease inhibitors, compared to 57% of men with AIDS.

Evidence of gender-based differences in medical treatment for women was brought to light in 1994 in data from NIH-sponsored research conducted through the Community Program for Clinical Research on AIDS (CPCRA). The observational database showed that for female and male patients at the same hospital-based AIDS clinics (located in the South Bronx and Harlem), fewer women than men were using antiretroviral medications, and fewer women were using prophylactic medications to prevent opportunistic infections such as PCP (Melnick et al, 1994). Data presented in Pasadena suggested that anti-PCP medications are not fully utilized by women with HIV infection in several other U.S. cities either.

The Social Basis for Differences in Care

Reasons cited by various speakers at the conference for gender differences in use of HIV treatments include lack of access, attitudes of patients as well as providers, adherence concerns, adverse effects, proper dosing in relation to body mass, and stopping therapies. Data were also presented at the conference on the use of protease inhibitors in particular. Investigators in Rhode Island found that among their patients, women and men do not appear to differ in their knowledge and awareness of protease inhibitors, but appear to differ in their level of interest in taking them and in their patterns of use when they do.

A federally funded investigation at Memorial Sloan Kettering Cancer Center in New York conducted focused interviews with HIV-positive women. It found that the major reasons for delay in seeking HIV-related care were connected to cognitive and emotional responses to learning their HIV status. Limited knowledge of HIV treatments and problems with medical personnel were commonly cited, and the investigators recommended expanding educational intervention and support services (Siegel et al, 1997).

Other researchers also emphasized quality peer education programs for women (Jiminez, 1997; Gallagher and Page, 1997; DiDonato, 1997). Consumer education, provided by well-trained and sympathetic peers, in a variety of community-based settings, has the potential to reach HIV-positive women with the information and skills needed to make treatment decisions earlier, thus having an impact on overall mortality, morbidity, and quality of life.

The few gender-based subanalyses of efficacy and tolerance to combination therapies and protease inhibitors reported at the conference suggest that the barriers to successful treatment were essentially social, not biological. Nelfinavir (Viracept) was reported to be equally efficacious and well tolerated in males and females (Agouron Pharmaceuticals, 1997). Data from a subanalysis of combination 3TC and d4T revealed similar efficacy in males and females (AmFAR, 1997). And data were presented from an Abbott Laboratories' trial (protocol 247) that did not indicate any gender differences in adverse events from ritonavir.

There are indications that easier access to care does increase the number of women with HIV who benefit from treatment. In New York State, women's survival differs by location. New York City has registered a significantly higher decline in AIDS-related deaths among women than in upstate New York, where 27% of the women who died with HIV infection had never received an AIDS diagnosis (Gallagher, 1997).

Personal Observations

To further elaborate on treatment trends in women, Treatment Issues interviewed clinicians, researchers, and HIV-positive women on the extent to which women are using the newer treatment regimens and how those treatments affect their survival.

Treatment Issues: What do you believe is the significance of women not having experienced the same survival improvements as men?

Dawn Smith, M.D. (Centers for Disease Control and Prevention): I would say that we have very short periods of data for this and it may be an artifact.

Janet Mitchell, M.D. (OB/GYN, Interfaith Hospital, Queens, NY): It's difficult to comment on national data. There were significant improvements in New York City. But, you can't compare women and men head-to-head. The women come from lower economic strata, their health status is poorer and therefore their outcomes are never going to be equal to that of men. For women with AIDS, it's never just AIDS that they are dealing with.

Alexandra Levine, M.D. (University of Southern California, Kenneth Norris Cancer Hospital): The epidemic in women has not yet peaked, so women now constitute the fastest growing HIV/AIDS group in the U.S. I think, with these increased numbers, we would still expect to see an increase in AIDS deaths, since the percentage increase in AIDS is greater for women than for men.

TI: Do you believe that women are as enthusiastic as men are about advances in HIV treatments?

Mary Jo Hoyt, N.P. (Infectious Diseases Clinic, St. Vincent's Hospital, New York City): My patients have so many day-to-day problems, especially if they have young children. They have difficulty committing to something that's difficult.

Carolla Marte, M.D. (Yale AIDS Program, New Haven, CT): Women consider all of the information, but often decide that they just can't do it. The demands of compliance to the schedule are such that they predict failure for themselves. They just can't devote the time that it takes to take care of themselves.

Janet Mitchell: African-American women are reluctant to embrace Western medicine. Women tend to want to find alternative therapies and not deal with combination therapies at this point. They view the AIDS medications as very toxic, and most of them interfere with the GI tract. That is counter to a deep cultural belief that to be healthy you need to be able to eat. So anything that interferes with the intake of food is suspect.

TI: Is this different than for the men that you see?

Mary Jo Hoyt: In my experience, it's easier for men to commit. They have access to a lot more information about HIV. Their problems with day-to-day living are not always as prominent.

TI: Is access to the newer treatments an issue for women? Do providers offer the same treatment options to both men and women?

Alexandra Levine: Access is still an issue. I think that fewer women than men are actually receiving optimal treatment. Health care providers in general are not yet knowledgeable about the early manifestations of HIV in women and may neglect to suggest HIV testing. They lose the chance to diagnose earlier and begin to treat earlier. Late diagnoses impact on the survival of women in a negative way.

Janet Mitchell: Once you get outside of New York/New Jersey, diagnosis is probably delayed in women, and appropriateness of care is questionable. Most ID [infectious disease] clinics are still very male-focused. Women do not always feel comfortable. I have talked to women who have known about their HIV status for two or more years and have not been in care yet.

Mary Jo Hoyt: We have a large female patient population, but they mostly live far from our hospital, and it's a big deal to get here once a month. There is no way that I can provide adequate treatment education in the clinic setting. Of the women I see, the ones who do the best have additional involvement in a CBO [community based organization] that is in their own neighborhood.

TI: What are some other reasons that women are not taking combination therapies and protease inhibitors?

Dawn Averett (Project Inform, San Francisco): The new drugs are an improvement, but they don't work for everyone. We need to keep looking for solutions to problems such as toxicity, dosing schedules, side effects. If we were trying to jump the Grand Canyon, would we quit because we're only three-quarters of the way there? No! We still need to get over to the other side. I'm hopeful. I get up every day because I believe I can survive this thing. But, let's face it, we're not there yet.

Dawn Smith: In our research, the primary reason that women were not on the drugs was because their physicians had not suggested it. But some of the women felt that they were doing well without the drugs and therefore were not taking them even though their doctors had suggested them. Some women had seen other people take the drugs and feel worse, so they didn't want to take them.

Mary Jo Hoyt: It's not what I tell them, or what they read; it's if a friend of theirs is using them and doing well.


Agouron Pharmaceuticals. National Conference on Women and HIV. May 1997; abstract 304.1.

CDC. Morbity and Mortality Weekly Report. February 28, 1997; 46(8)165-73.

Currier JS. National Conference on Women and HIV. May 1997; abstract 304.7.

DiDonato D et al. National Conference on Women and HIV. May 1997; abstract P1.38.

Gallagher B and Page J. National Conference on Women and HIV. May 1997; abstract 217.6.

Gallagher B et al. National Conference on Women and HIV. May 1997; abstract 1.21.

Herbert B. National Conference on Women and HIV. May 1997; abstract 108.2.

Jiminez V et al. National Conference on Women and HIV. May 1997; abstract 209.1.

Lemp G et al. Journal of Infectious Diseases. July 1992; 166(1):74-9.

Odem S. National Conference on Women and HIV. May 1997; abstract 304.5.

Powell A et al. National Conference on Women and HIV. May 1997; abstract 108.4.

Rothenberg RM et al. New England Journal of Medicine. November 19, 1987; 317(21):1297-1302.

Seigel K et al. National Conference on Women and HIV. May 1997; abstract 108.1.

Stone VE et al. National Conference on Women and HIV. May 1997; abstract 227.1.

A note from The field of medicine is constantly evolving. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

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This article was provided by Gay Men's Health Crisis. It is a part of the publication GMHC Treatment Issues. Visit GMHC's website to find out more about their activities, publications and services.
See Also
More Statistics on Women Living With HIV/AIDS in the U.S. and Canada