PWN-USA Joins Merck for National HIV Campaign "I Design"

In an effort to encourage people living with HIV to speak to their doctors about their current treatment, the Positive Women's Network -- United States of America (PWN-USA) has teamed up with Merck to launch "I Design," a national HIV educational campaign. Music industry insider turned AIDS activist Maria Davis joins Project Runway All Stars' Mondo Guerra and photographer Duane Cramer as this campaign begins its two-year anniversary. EDGE spoke with her and PWN Executive Director Naina Khanna about what the group is doing to help amplify the voices of women living with HIV.

"Women need to talk to their doctors so they can get the right treatment," said Davis. "I was diagnosed with HIV in 1995, and I didn't have anybody to talk to. I didn't want to talk to anyone because of the stigma and discrimination in the African-American community."

Davis was a hip-hop music promoter best known for appearing on Jay-Z's first album, "Reasonable Doubt," when she discovered that her fianc� had infected her with HIV. Three years later she had AIDS. She put her diagnosis on the back burner to take care of her two school-aged kids. This is all too common, said Davis, who noted that this I Design campaign was all about challenging women to advocate for themselves, to "say you are important, you are loved, and please take care of yourself."

Today, women make up about a quarter of the HIV epidemic in the United States, or about 300,000 women. There are severe racial disparities within this group, however, with Black women accounting for 2/3 of new infections in 2010, although they only constitute 13 percent of the population. Latina women were close behind.

"There are unique ways in which this is impacting Black and Latina women," said Khanna. "It is one of the leading causes of death in Black women in the U.S. There are disparities in not only the way this is impacting women of color, but in morbidity and mortality rates."

Although numbers of new HIV infections are down among women of color compared to a decade ago, the total number of women living with HIV in the U.S. continues to grow every year, due to increased access to lifesaving treatment.

"Data shows viral suppression is a good strategy," said Khanna. "If people with HIV are on treatment and their viral loads are suppressed and undetectable for six months or more, the likelihood of transmission to others is close to zero. So the more people get access to treatment, the better chance we have to reduce new infections."

Science is one thing, but society is another. Khanna said that stigma like Davis faced is only getting worse over time, evidenced by the increase in criminal prosecutions of people who are HIV-positive, and fueled by a range of failed policies.

"There is a lack of comprehensive sex ed; people are not learning about HIV today like they were in the '80s and '90s," she said. "Myths about transmission are still floating around, and most people don't want their food prepared or child taken care of by a person with HIV. When you think about what jobs most women with HIV are working, this a way that stigma can impact their daily lives."

Khanna also said that outdated HIV criminalization laws cause some women to delay testing or entry to care for fear of being prosecuted for having HIV.

"The way the laws are set up, if you don't know, you can't be prosecuted," said Khanna. "So they're a barrier to testing, disclosure and treatment. And in most cases, no transmission of HIV is needed to cause prosecution."

But perhaps the biggest discrimination against women comes from their health care providers. Doctors often don't ask women if they want to be tested for HIV, or assume that they are not at risk if they are older, married, have kids or are in a relationship.

"I don't know if that's one of the reasons these numbers are going up, but in my own personal work with testers, it seems that women always have these crazy answers about why they don't know their status," said Davis. "But I let them know that even if they might not test HIV-positive, this information is good for everyone, and they might have friends and family members with HIV that can benefit from it."

Testing has historically been predicated on a behavioral risk model, and Khanna said that this never really applied to women. The conversation needs to be normalized so that doctors offer HIV testing, especially now that the Affordable Care Act covers it.

"I was denied testing twice before I tested positive," said Khanna. "And we hear those stories all the time from women who are diagnosed late and already have AIDS. With this campaign we are not only educating women, but eradicating the bias from providers about who is at risk for HIV."

While there are a number of resources in New York City that specifically deal with women, nationally, there are not enough. Khanna said that while over 80 percent of women with HIV have been tested and 70 percent were linked to care, only 41 percent were effectively retained in care. Looking at adherence and efficacy, numbers even get lower, adding up to only about 26 percent of U.S. women with virally suppressed HIV.

"We are not doing a great job by any means in a country that has a lot of resources and information available," said Khanna. "Funding for HIV has been either flat or declining over the years, and the total number of PLWHAs is increasing. And we know more about the unique ways that women are impacted, like how often they need PAP smears, conceiving naturally and providing birth control, and a whole range of issues."

Khanna said that while community-based organizations continued to shutter their doors, more and more women need child care, transportation, mental health care, support groups, and intervention for violence. About 30 percent of women with HIV are diagnosed with PTSD -- six times higher than the general population. These women aren't dying from HIV, said Khanna, they are dying from violence, addiction and trauma.

They hope that this I Design campaign will help. Davis urges women to go online and vocalize ways to tailor their HIV treatment plan by approaching it through their own lens.

"We enjoy sharing things with other women," said Davis. "We gossip, we watch reality TV together, so let's share this important information that can help save other women's lives."