2017 has been the year of 1,001 heartbreaks. New attacks on healthcare, human and civil rights, bodily autonomy, reproductive freedom and the dignity of our communities punctuate each week. But in the midst of this darkness, there’s been an incredible renaissance for people living with HIV: a growing acceptance of data clearly demonstrating that people with HIV who are durably virally suppressed cannot transmit the virus.
The first time I heard about viral suppression as a means to prevent HIV transmission was on a forum on a popular HIV website, years before Swiss researchers released a consensus statement addressing this topic. I showed the discussion threads to the HIV-negative guy I was dating at the time. Our minds were blown. I had been diagnosed years before, and was newly motivated to get into medical care and start treatment. Suddenly, he took an interest in my labs.
Several years later, I had been appointed to the President’s Advisory Council on HIV/AIDS (PACHA), when Dr. Myron Cohen came in to a meeting to present early data from the HPTN 052 trial, which already showed that anti-retroviral therapy prevented transmission in 1,763 HIV sero-different couples. I broke down in tears, certain that this was about to be a game changer for me and the estimated 1.1 million other people living with HIV in the U.S.
Except it wasn’t.
For years after the data was published, public health institutions and HIV leaders tried to have it both ways: urging increased investment in medication, but refusing to change the language used to describe transmission risk. This perpetuated a confusing schism: people living with HIV (PLHIV) were simultaneously sexually radioactive while we were mathematically modeled as benign. The data was good enough to shift public health priorities but advancing human dignity of PLHIV was not a priority.
Despite the fact that acclaimed researchers reached consensus on viral suppression as an effective HIV prevention strategy as early as 2008, and that scientific data supporting this conclusion has been available in academic journals since 2011, it’s only in 2017 that the discourse of viral suppression transformed into a tangible opportunity to advance the rights of people with HIV.
This wasn’t for a lack of trying. At Positive Women’s Network – USA, a national membership body of women, including women of trans experience, living with HIV, we know that because we’ve literally been examining this question for years. A survey we conducted in 2013 found that more than half of women living with HIV (WLHIV) who were consistently engaged in healthcare had never been informed by their medical providers that if they were virally suppressed, they were less likely to transmit HIV, though some had heard this information through other sources. We asked the same question again in 2015 and found only modest improvements: 40% of WLHIV had still not been told by their own medical providers that viral suppression was an effective HIV prevention strategy. Levels of internalized stigma and negative body image were distressingly high.
Denying women living with HIV access to accurate information about our bodies, our health, and our sexual and reproductive options is a human rights violation. But it’s nothing new. This country has a long legacy of policing the bodies, sexuality and reproductive freedom of people of color, and the majority of U.S. WLHIV are Black; secondarily, Latinx. Much of the U.S. economy was built on the control of Black women’s reproductive possibilities. And over 30 states still have laws that place people with HIV at risk of prosecution on the basis of their HIV positive status. Thus, women with HIV receive medical care at the intersections of HIV stigma, racial bias, and an ever-diminishing spectrum of reproductive rights.
Reluctance from medical providers and public health officials to share information about viral suppression rests on a complex set of stigmas, but boils down to one basic idea: people with HIV can’t be trusted. We can’t be trusted to take our medications, to care about and protect others, and to tell our providers the truth about our sexual and medical decisions. It’s especially ironic given that people with HIV report protecting their loved ones as a major motivation in sexual and reproductive decision-making.
In 2017, though, we finally reached a tipping point. Following a massive lift by the Prevention Access Campaign, Dr. Anthony Fauci from the National Institutes for Health acknowledged that people with HIV who are undetectable cannot transmit HIV. Two months later, the Centers for Disease Control and Prevention (CDC) followed suit a full 6 years after data was published. The Lancet ran an editorial on the U=U (Undetectable=Untransmittable) campaign in November. But people with HIV have been knowing (and practicing) viral suppression as a responsible and ethical prevention strategy for years, with limited support from their providers- sometimes facing stigma and discrimination as a result of this choice. It’s a travesty that it took this long for public health and the HIV field to catch up. And have we really? How many HIV and LGBTQ organizations have retrained their staff to make sure they understand the science?
One can’t help but wonder what role racism plays in the field’s apparent distrust of people with HIV. Even today, media coverage on this topic somehow manages to quote only white people’s voices, despite the fact that 63% of gay and bisexual men diagnosed with HIV in 2015 were Black or Latinx, and that nearly 80% of women with HIV in the US are Black or Latinx.
This World AIDS Day, let’s celebrate the advancement of Undetectable=Untransmittable and its implications for sexual and reproductive rights. But we can also allow our hearts to be a little broken that it’s taking this damn long.
Naina Khanna is the Executive Director of Positive Women’s Network -USA and a Public Voices Fellow of the Op-Ed Project.