Merck Survey Highlights HIV Knowledge Gaps

New options for the treatment and prevention of HIV/AIDs in recent years have not erased lingering stigmas and misinformation about the disease, especially among younger black communities in the US. Advocates hope that greater awareness of “U=U,” or “undetectable equals untransmittable,” can help to address ongoing discrimination and disparities.

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Survey data collected as part of Merck & Co., Inc.'s ongoing “Owning HIV” campaign revealed a significant prevalence of serophobia – an aversion to or fear of people with HIV – in the US adult population. However, the Prevention Access Campaign’s undetectable equals untransmittable (U=U) messaging is making inroads among physicians, public health officials and advocates in the HIV/AIDS community around the world.   

HIV/AIDS-related disparities and stigma among younger individuals identifying as black or African American persist, according to the Merck survey data. For example, 53% of African American women living with HIV reported losing the option to have children, via permanent birth control, due to their HIV diagnosis. Twenty-two percent of HIV-negative African Americans reported a fearfulness of being tested for HIV, due to the judgement that could come along with a positive result. “That statistic is incredibly upsetting, but unfortunately not surprising,” said Peter Sklar, director, clinical research, at Merck Research Laboratories. “I’ve come across many young people who don’t get tested or seek treatment because of that fear.”

Peter Sklar, director, clinical research, Merck Research Laboratories Merck

Misinformation and gaps in knowledge about HIV/AIDS can lead to discrimination and social avoidance, the survey data found. Thirty percent of HIV-negative millennials said they would prefer not to interact socially with someone who has HIV, and 28% said they have actively avoided hugging, talking to, or being friends with someone with HIV. Thirty-three percent of black or African Americans surveyed reported someone not shaking their hand due to their HIV status.

Wanona Thomas, an HIV-positive activist and founder of Live In Your Truth, a non-profit organization focused on recovery from a diagnosis, said during a Merck webcast on 18 November, 2020, that after becoming U=U, she was able to have a healthy and successful natural birth. Thomas uses Facebook as a platform to communicate and help others. Still, “stigma and discrimination have been part of my story since day one,” said Thomas, who reflected on personal experiences of family members cleaning bathrooms after she’d been in them, and people continuing to believe that the disease can be transmitted through casual contact.

Adults aged 18 to 34 account for the majority of new HIV diagnoses in the US, and 40% of new diagnoses occur in black and African Americans, a group disproportionately impacted in comparison with all other racial or ethnic groups in the US, according to data from Merck’s Owning HIV campaign. Merck’s survey data was compiled from the responses of 1,600 young adults, between the ages of 18 and 36.      

The concept of U=U was drafted as a consensus statement in 2016 by HIV researchers and has been promoted in the US, and globally, by the Prevention Access Campaign. U=U videos, posters and GIFs created for use on social media are available, courtesy of the campaign, and with support from Housing Works, a New York City-based non-profit, and ViiV Healthcare. Last year, Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases (NAID), called U=U “the foundation of being able to end the [HIV/AIDS] epidemic,” adding that pre-exposure prophylaxis, or PreP therapy, is also critical in curbing incidence rates.

In an interview with In Vivo, Sklar said, “New prevention modalities are coming along,” such as longer-acting PreP therapies, but acknowledged the adherence burden for current once-daily regimens like Gilead Sciences, Inc.'s Truvada (emtricitabine and tenofovir disoproxil fumarate) and Descovy (emtricitabine and tenofovir alafenamide). “At least for now, particularly in women, short of near perfect adherence to those PreP strategies, transmission still takes place,” said Sklar. “We have a tremendous amount of tools to both treat and prevent HIV, but they’re not universally known by people, in terms of how best to use them, or even if they’re available.”

On 17 November, Viiv Healthcare, a HIV specialist company founded by GlaxoSmithKline plc and Pfizer Inc. in 2009, announced that it received FDA breakthrough therapy designation for cabotegravir, a long-acting, injectable PreP therapy administered every eight weeks. ViiV previously revealed Phase III trial results demonstrating cabotegravir’s superiority over Truvada, among women. (Also see "Viiv’s Cabotegravir Shows Superiority Over Truvada as PrEP Among Women" - Scrip, 9 Nov, 2020.) Merck is also developing a long-acting PreP therapy, islatravir, as a once-monthly oral formulation. Islatravir was licensed to Merck from the Yamasa Corporation in 2012. Merck announced a collaboration with the Bill and Melinda Gates Foundation on 16 November to provide funding in support of a Phase III trial of islatravir in women and adolescent girls at high risk for acquiring HIV in sub-Saharan Africa. Merck also plans to conduct additional studies with islatravir, such as a global Phase III trial called IMPOWER 24, in men and women.

Overcoming the burden of a daily tablet for PreP therapy with longer-acting options will likely help to further prevent HIV transmission. But disparities exist regarding access to PreP therapies as well. Forty-four percent of people who could benefit from PreP therapy are African American, roughly 500,000 individuals. But only 1% of that population – or 7,000 individuals – were prescribed PreP therapy between September 2015 and August 2016, according to a Centers for Disease Control and Prevention (CDC) report.   

During the Merck webcast, Sklar participated alongside HIV activists, like Thomas, and said he came to Merck almost 15 years ago specifically to work on HIV. Although Sklar works primarily in research, he also sees HIV patients on a voluntary basis, and consults on Merck’s Owning HIV campaign. Thinking back over the history of the AIDS epidemic, Sklar said different personalities who spoke out and advocated on behalf of the HIV community made a big impact. He recalled working with Earvin “Magic” Johnson, an NBA basketball Hall of Fame player, following Johnson’s positive diagnosis in 1991. “Working with Magic in churches, in communities of color, just made an enormous difference,” said Sklar. “Having been involved since the early years [of the HIV/AIDS epidemic], the most effective campaigns and awareness efforts came from peers. As we now flash forward three decades, I think people still hear information best from their peers,” said Sklar.

“What’s shocking about the [Merck Owning HIV survey] findings … it’s really disheartening to me to see how much stigma still persists, how much misinformation still persists,” said Sklar. “We’ve had such advances in our science, but that really hasn’t found its way into changing perceptions about how HIV is transmitted, or if one is infected, and how one can prevent themselves from passing along HIV to others.”