Pre-Conference Survey Results Shed Light on Needs of Women with HIV


Last October, a pre-conference to the National Conference on Women and HIV/AIDS in Los Angeles drew more than eight hundred women living with HIV. The Women's Caucus on HIV/AIDS of Los Angeles County looked at a variety of profiles of the pre-conference participants in order to better understand the service needs of women with HIV/AIDS. In this article, Nancy Wongvipat, M.P.H., takes a look at highlights of findings of that survey, analyzing the results among women from Los Angeles County.

How a sampling of women with HIV/AIDS see themselves and their lives was shown in an exploratory survey conducted last fall by the Women's Caucus on HIV/AIDS.

All fifty states were represented in the survey, in which 469 women living with HIV participated. Experiences of women living in both urban and rural settings were examined, and 62 of the women surveyed were L.A. County residents.

Issues examined included sociodemographics, access to services, medication adherence, pregnancy, employment, social support, and overall quality of life.

General Demographics

Serostatus, length of time since diagnosis, age, race/ethnic identity, education and income were all examined in the survey.

Five years was the average length of time since participants had received their HIV diagnosis, with a range varying between one and sixteen years.

Sixty-six percent of the women reported being HIV positive, 33 percent reported having an AIDS diagnosis, and 1 percent reported that were not aware of their serostatus.

The average age was thirty-nine, with a range of age twenty-four to sixty-two.

Twenty-six women reported that they were residents of L.A.; fifteen women said they lived in Pomona/Whittier/Covina; seven were from the Southeast/South Bay area; six in the San Fernando Valley; four in Santa Monica. One respondent each reported being from of the following areas: Alhambra; Glendale; North Hills; and Palmdale.

The racial/ethnic distribution was 39 percent Latina, 29 percent African-American, 21 percent Caucasian, and 3 percent Asian Pacific Islander. Eight percent identified themselves as "other."

Eighteen percent of the respondents reported having less than a high school education, while 82 percent reported having at least a high school education. Forty-five percent reported having at least some college education.

An annual household income of $10,000 or less was reported by 69 percent of the respondents, while 79 percent reported making less than $20,000 per year.

Service Provision

Eighty-five percent of the women reported that they receive services from an AIDS-service organization, while 15 percent said that they do not receive services from an ASO.

Ninety-six percent reported having a case manager, while 4 percent do not. Eighty-six percent of the respondents reported having a case manager who talked to them about their health, while 12 percent of the respondents said that they do not have a case manager who talked to them about their health.

When asked about their oral health care, 60 percent of the women reported having been to a dentist in the past six months, while 40 percent had not. Reasons for not going to the dentist included that they kept putting it off or were busy; had no money or insurance coverage; feared or disliked going to dentist in general; felt there was no need; had dentures or no teeth; no appointments were available; disliked their provider; or had previously missed their appointment.

When asked for the three most important services that they had received from an ASO, the top-ranked services were: peer and group support/mental health/counseling; housing; medical care/medications; food assistance; education and treatment advocacy; and transportation.

When asked for the three most important services that they would like to see offered at an ASO, the top-ranked responses were: peer and group support/mental health/counseling; social activities/dating and heterosexual groups; education and treatment advocacy; transportation; vocational and educational development; and medical care/better medication management.

Other Issues

The survey also covered a variety of other issues affecting women's lives, including the following areas:

Physical and Mental Health

From a scale of 1 (worst) to 10 (best), the women rated both their physical and mental health state as 7. Eighty percent reported currently taking HIV medications, while 20 percent were not.

Domestic Violence

Abuse by a partner, spouse, family member or others was reported by 64 percent of the respondents.


More than half of the women reported living alone. Fifty-two percent reported having children under age eighteen living with them. The average number of children was two, with a range of one to five.


When asked, "When you have sex, who is it with?" Eighty-nine percent reported having sex with men, 7 percent with women, 4 percent with both women and men. The average number of sex partners reported in the past twelve months was less than one, with a range of zero to four.


When asked about non-prescribed drugs used in the past six months, 42 percent reported using cigarettes and 27 percent reported using alcohol.

Use of other substances was reported as follows: marijuana, 22 percent; cocaine, 12 percent; crack, 7 percent; heroin, 5 percent; speed, crystal and uppers, 5 percent; and hallucinogens, 2 percent. Fifteen percent reported using other non-prescribed drugs.

What the Results Mean

Understanding needs of all women living with HIV/AIDS and meeting those needs through access to comprehensive, integrated, women-friendly services is critical. Providers wishing to assist HIV-positive women may consider improving psychosocial services by addressing a wide range of life concerns and not being focused on HIV disease to the exclusion of other life issues that are equally important.

For more information on this study, please contact Nancy Wongvipat at or call 323-993-1511.

Nancy Wongvipat, M.P.H., manages AIDS Project Los Angeles' Prevention Program . She can be reached at 323-993-1511 or by e-mail at

This article has been reprinted at The Body with the permission of AIDS Project Los Angeles (APLA).