The study, among the first to provide a glimpse into the lives of some of these women, show them to be a neglected group of patients who are marginalized and feel stigmatized by their disease.
Some 62 percent of them said they had trouble finding a doctor for ongoing medical care, and many reported lacking a wide range of other services, from help with transportation and basic chores to access to support groups.
“Yet again in this epidemic, women are disenfranchised,” said Yvonne Maldonado, MD, professor of pediatric infectious disease and the principal investigator of the study. “There are populations of women who have no support and are not getting the care that they need.”
The study was presented July 21 by first author Clea Sarnquist, DrPH, a research associate in pediatrics, at the International AIDS Conference in Vienna.
The study examines access and barriers to care for women with HIV. There is a separate, larger study sponsored by the federal Centers for Disease Control and Prevention, in which the Stanford investigators participate, that includes such issues among both men and women with HIV infection, although not specifically focusing only on rural women as in the current study.
Women constitute a larger proportion of the total AIDS caseload nationally, increasing from 8 percent in 1985 to 27 percent in 2006, the latest figure available from the CDC. In California, there were nearly 19,000 women living with the disease in 2009, according to the state’s Office of AIDS.
Through contacts with 11 clinics in rural areas of the state, the Stanford researchers were able to identify and conduct in-depth interviews with 64 of these HIV-positive women. The women were concentrated in the Central Valley, the Inland Empire (San Bernardino and Riverside counties) and rural areas around Sacramento. While they may not be a representative sample, they provide a starting point for understanding the distinct problems women with HIV in rural California may face. The women poured out their hearts to the interviewers, with many saying it was the first time anyone had taken an interest in the problems they faced as HIV-infected individuals, Maldonado said.
“The women were overwhelmed. They said, ‘Nobody’s ever asked us what we need,’” she said. “These are women who are hidden.”
The patients, whose average age was 47.5, represented a diverse ethnic population; about half were white, 30 percent were Latina and 16 percent black. Nearly 80 percent said they had become infected with the virus through heterosexual contact. Some 70 percent were unemployed, and 45 percent were living below the poverty level. About a third served as sole providers for children.
Among the troubling findings was the women’s difficulty in finding a doctor for ongoing care and the general dissatisfaction among those women who did find a practitioner.
“In some cases, they felt they were not being treated well by the staff and the physicians — that they were stigmatized because of HIV,” Maldonado said. In general, she said, “They were living in isolated areas, where there is a lack of information about HIV infection. There is a lot of worry that people will find out they are HIV-positive.”
Some of the women also said they felt discriminated against in the workplace, with 18 percent claiming they had been laid off from jobs because of their HIV status.
The women reported lacking support for a whole range of services. About a half said they needed help with basic chores, such as cleaning and grocery shopping, but couldn’t find available services. Some 44 percent said they needed help finding housing, and while they were not homeless, their living situations weren’t stable. That is worrisome, Sarnquist said, because HIV-infected individuals who lack stable housing tend to have poorer health and social outcomes.
Some 44 percent of the women said they had no access to local volunteer support services specially designed for people with HIV. Some also had difficulty getting to doctor’s appointments, with 23 percent saying they needed help with transportation, but couldn’t find any assistance.
In general, there were few support groups available where these women could share their myriad concerns, Maldonado said.
The study findings suggest that the majority of the women did have case managers and that these managers could perhaps be a conduit for better services in the future. “This study provides concrete areas for improvement in meeting the needs of this often-overlooked population,” the researchers concluded. “Given the current economic climate, it is important to both improve linkages between existing services and ensure that these programs continue to be made available to such populations.”