Opinion

HIV-positive women seek to reduce stigma

New report opens long overdue conversation for underserved community

December 2, 2013 11:00AM ET

by Dani McClain @drmcclain

A woman gets an instant HIV/AIDS test inside a moblile clinic of John Wesley Community Health Institute during a health fair sponsored by World Literacy Crusade and the American Health and Education Clinics at the Church of Scientology community center on June 5, 2013 in Los Angeles, California.

Kevork Djansezian/Getty Images

On Nov. 5, a Dallas jury sentenced Larry Dunn to 40 years in prison for killing his girlfriend, Cicely Bolden. Dunn stabbed Bolden in her bed a week after she disclosed that she was HIV-positive, then used her status as his defense. “She killed me, so I killed her,” he said while confessing to police. According to Dunn, the two had had unprotected sex multiple times before her disclosure. He killed Bolden in September of 2012 and has not yet tested positive.

The U.S. network of HIV-positive women (PWN-USA), a national organization for women living with HIV, has dedicated a new report to Bolden. Her murder brought to light a number of issues facing the 300,000 women in this country who live with HIV, including their disproportionate experience of violence at the hands of romantic partners. Bolden, 28, put a face on a population that bears the brunt of the epidemic: African-American women who account for two-thirds of new HIV cases among women in the U.S.

Bolden’s murder also brought to light a taboo but obvious subject: despite their lack of representation in pop culture or even in the medical literature, women living with HIV do, in fact, have sex. While HIV-positive men seem to have internalized the idea that they can continue enjoying vibrant sex lives, women are generally treated as if they are asexual, according to Naina Khanna, one of the report’s authors and executive director of the organization.

“It’s commonly understood that gay men with HIV are having sex,” Khanna said. “There’s a whole culture around, ‘Are you bare backing?’ ‘Are you serosorting?’” Conversations about not using condoms or choosing partners based on HIV status are common on gay blogs and dating sites. Doctors, nurses, case managers and social workers who support these men’s health know to ask such questions, and are able to better serve them.

But similar conversations are not happening among HIV-positive women, which is why PWN-USA released its landmark survey assessing “the state of sexual and reproductive health and rights for women living with HIV in the U.S.” The study is based on questionnaires crafted by the research team that were then completed by HIV-positive women around the U.S.

Among their findings:

· 69 percent of respondents had been sexually assaulted, compared to 20 percent of all U.S. women.

· 72 percent of respondents had experienced intimate partner violence, compared to a quarter of all U.S. women.

· Fewer than half of respondents said that a healthcare provider had told them that the chance for transmitting the virus is very low when the amount of HIV in the bloodstream is low, a core tenet of the treatment as prevention approach to encouraging people living with HIV to adhere to their medications.

· 39 percent reported wanting children in the future, but the women themselves — not their healthcare providers — are more likely to initiate conversations about fertility and reproductive options.

· Nearly two-thirds of respondents said they had a poor perception of their bodies after receiving their diagnosis. In written responses, they frequently described themselves as “dirty,” “diseased,” “ugly” and “unwanted.”

Director Tyler Perry's recent morality tale 'Temptation' implies that an HIV diagnosis is a fitting punishment for a cheating wife.

The written responses show the emotional impact of HIV on these women’s lives. “I don’t feel as pretty as I used to. I let myself gain weight to avoid being asked out,” wrote one of the participants in the study. A woman suppressing the virus through medication and use of condoms has nearly zero chance of transmitting the disease. However, the report shows that many women are still gripped by fear and insecurity. “I can’t relax and enjoy sex at all. I’m too afraid I will infect my partner although we remain protected,” another woman told the PWN-USA researchers.

Out of the 200 women living with HIV who attempted the survey, 179 women responded. Despite the need for sensitive and context appropriate research, Khanna said PWN-USA has limited resources as evidenced by its sole full-time staff and a mere $250,000 budget. In the current research, Khanna and her three co-authors, all of whom are HIV-positive, asked questions that are often overlooked by other researchers.

“A lot of respondents said, ‘No one has ever asked me this kind of thing before,’” Khanna said. “We hope that some existing research projects will start to look at some of these issues.”

This lack of engagement is a legacy from the early days of HIV/AIDS, when women who contracted the virus were largely left out of the public health community’s conversations and response. Women with the virus exhibited symptoms that differed from men’s and so were refused an AIDS diagnosis and the accompanying disability benefits. The call for gender equity in care and services for those living with HIV was aided by a 1990 lawsuit demanding a broadened definition of AIDS. Demonstrations at the Centers for Disease Control (CDC) ramped up the pressure. Two decades ago, when the CDC changed its definition of AIDS to include those with the virus that had symptoms including cervical cancer and the opportunistic infections more commonly seen among women, the official count of women with AIDS increased by more than half.

Raising public awareness about the concerns of HIV-positive women is an ongoing effort. That is why PWN-USA’s report targets public health institutions and service providers. But the number one audience is the women themselves. On Dec. 3, PWN-USA will host an online meeting for women living with HIV and their allies to discuss how to use the new data for organizing. The need for advocacy campaigns is clear. As the Affordable Care Act shifts the source of coverage for some people living with HIV, there are opportunities to demand policies that encourage providers to prioritize the sexual and reproductive health care needs of these women.

But healthcare providers are not the only group that should be held accountable. For example, film director Tyler Perry would be a good campaign target. Perry’s recent morality tale “Temptation” implies that an HIV diagnosis is a fitting punishment for a cheating wife. So would the radio personalities who helped fuel an Internet hoax that wrongly accused a New York man of intentionally infecting hundreds of people. Their cynical storytelling helped whip up public support for the laws in more than 30 states that demand harsher prosecution and sentencing for people living with HIV. These laws criminalize behaviors that are otherwise legal and don’t pose a serious transmission risk, like having consensual, protected sex or spitting at someone.

Many Americans still harbor prejudice and baseless fears about the HIV-positive community. Stories like Cicely Bolden’s and those told by the women in the PWN-USA report can help reveal the impact of this ignorance. But its main message and the conversation its authors hope to spark will likely be even more powerful for HIV-positive women themselves, many of whom have internalized the stigma the broader culture has placed on them.

“It’s OK to be a sexual being and to have reproductive freedom,” Khanna said, summarizing the report’s key message. “You have as much right to be sexual as anyone else.”

Dani McClain is a writer living in Oakland, Calif. Her coverage of reproductive health and sexuality is supported by the Nation Institute.

The views expressed in this article are the author's own and do not necessarily reflect Al Jazeera America's editorial policy.