Women With HIV Face Sex Negativity, Shaming and Multiple Obstacles to Comprehensive Care, Survey Finds

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Many doctors fail to tell women living with HIV that having an undetectable viral load dramatically reduces their risk of transmitting HIV, according to a new report released Thursday.

The study, conducted by the advocacy group Positive Women's Network-USA (PWN-USA), found that out of 180 women surveyed, 38% were not told by their doctors that HIV viral load suppression can minimize the risk of HIV transmission. This is despite a growing body of research showing that effective antiretroviral therapy, pre-exposure prophylaxis (or PrEP) and reproductive health advancements "have made having sex and building families safer, easier and less expensive" for women living with HIV, states the report, which was released on National Women and Girls HIV/AIDS Awareness Day.

"They're not teaching treatment as prevention," said PWN-USA board member Evany Turk, one of the study's researchers.

Researchers also discovered that women 44 years old or younger living with HIV did not receive adequate sexual and reproductive healthcare. Of those respondents of reproductive age, only 40% said their doctors had asked in the past year if they needed birth control, while only about 39% said they were asked if they wanted to get pregnant.

These statistics haven't changed much over the last three years. A sexual and reproductive healthcare study conducted by PWN-USA in 2013 found that 46% of women said their doctors didn't tell them about the link between viral load suppression and transmission risk. And 48% of women said their doctors never asked if they had or wanted to have children.

Naina Khanna, PWN-USA's executive director, attributes the lack of comprehensive reproductive and sexual healthcare to a legacy of "pervasive sex negativity and shaming" directed toward people living with HIV -- one that even exists at the highest levels of government. After all, she said, the updated National HIV/AIDS Strategy for the United States, released in July, doesn't even mention the word "reproductive," let alone discuss how to integrate sexual and reproductive health services with HIV care services.

"As a society and a culture, we're very uncomfortable acknowledging that people living with HIV have sex, have th¬¬e right to have sex and have the right to enjoy it," said Khanna. "There's a lot of work to be done to undo that."

Part of that work, said Khanna, includes retraining healthcare professionals -- from nurses and doctors to caseworkers and counselors -- on "the science of treatment as prevention," as well as repealing HIV-specific criminal laws, which were on the books in 33 states as of 2011.

Inadequately inclusive care isn't limited to reproductive and sexual health, though. The report also found significant gaps in mental health services. Of the respondents, 17% said they were diagnosed with post-traumatic stress disorder (PTSD), while nearly 65% reported being diagnosed with depression. Yet, only 59% of the respondents who wanted to see someone for counseling or therapy reported being able to do so as often as they needed.

The link among trauma, mental illness and HIV has been well documented, yet healthcare providers still fail to properly assess and treat all the issues that people living with HIV face, said Maria Mejia, global ambassador and community advisory board member of the Well Project, a global resource for women living with HIV. Mejia, who has lived with HIV for nearly 28 years and is an abuse survivor, said that doctors tend to focus only on your diagnosis, your organs and your labs.

"It's specifically about your viral load and CD4 count and that's it," said Mejia. "I wish I would have a doctor who could take care of everything."

If not screened and treated for underlying conditions, women living with HIV are at higher risk for additional trauma, substance abuse and other issues that negatively impact their physical and mental health, said Vickie Lynn, a Well Project community advisory board member and doctoral student in public health. Lynn, who's lived with HIV for 30 years, said that more clinics need to adopt an integrated care model in which women living with HIV can access all needed services in one place and healthcare providers can collaborate on patient wellness.

"Unfortunately our fragmented system continues to treat people's issues in silos," Lynn said. "Adopting this new model of treatment can actually reduce cost, improve health outcomes and increase quality of life for people living with HIV."

Transportation is also a significant obstacle for women living with HIV to receive and stay in care. According to the study, half of the respondents who had missed a doctor's appointment within the last year said it was due to a lack of transportation. Inadequate transportation was also the most common reason why 32% of respondents had missed filling an HIV medicine prescription in the past year (copay cost was the second most common barrier).

"The intersections of poverty and infrastructure around public health and transportation access are creating a tremendous set of obstacles that women have to surmount in order to engage in care effectively," said Khanna.

For the study, PWN-USA reached out to 180 women from seven regions across the country, including Baton Rouge and Chicago, where Turk is based. Of the respondents, 67% were black women -- who accounted for 61% of newly diagnosed women in 2013 -- while 9% were Latina. Nearly 90% of participants lived in poverty, with 45% surviving on less than $10,000 a year.

The report, though, is not without limitations. The researchers noted during a webinar on Thursday that the results do not fully capture the perspectives of trans women living with HIV. According to Turk, PWN-USA did not hear from trans-identified women when looking for researchers to conduct the study. So while some trans women living with HIV did answer the survey, the lack of a trans-identified researcher limited outreach to the transgender population, said Turk.

"But next time, we can do better," she said.