HIV Research and Prevention Campaigns Need To Speak To Women

By Zachary Zane July 16, 2019

A few months ago, the New York Times reported that over half of people living with HIV/AIDS worldwide are women, yet the vast majority of HIV research is conducted on gay and bisexual men.


In fact, a 2016 analysis by amfAR, an international nonprofit organization dedicated to the support of AIDS research, HIV prevention, treatment education, and the advocacy of AIDS-related public policy, found that women represented a median of 11% in cure trials and 19% in trials using antiretroviral drugs.


Of course, HIV and AIDS in the United States were traditionally thought of as a “gay man’s disease,” which would explain why research and prevention outreach initially centered on men who have sex with men.


Even though it’s clear that the virus impacts the lives of women all over the globe, “the bulk of biomedical research funding and researchers are in the US,” explains amfAR Vice President & Director of Research, Rowena Johnston. According to the 2016 Global Investment in HIV Cure Research and Development report, $252 million of the $268 million invested in research came from the United States. And while not all of that funding goes to research in the US, a lot of it does. “And because the epidemic in the US is predominantly male, most of the potential trial participants available for clinical trials are also male,” explains Johnston.


Advertising prevention techniques, specifically for pre-exposure prophylaxis (PrEP), has also predominantly focused around MSM. That’s why, despite about 1 in 5 new HIV diagnoses occurring among women in the US, 94% of all PrEP users in 2017 were men.


However, in recent years, there’s been a push to reach women who are at high risk for HIV infection, specifically Black and Latina womxn, who are disproportionately affected by the virus, yet tend to lack access to information about effective prevention techniques. In fact, in New York City, 90% of newly diagnosed women are either Black or Latina, and the lifetime risk of HIV for African American women in the U.S. is 1 in 54 compared to 1 in 941 for white women.


Epidemiologist Joella Adams, MPH, of Brown University School of Public Health, researches the efficacies of PrEP prevention strategies for women using mathematical modeling.


Adams makes clear that knowledge around PrEP is one of the biggest inhibitors. A recent study in Philadelphia found that only 18% of heterosexual men and women interviewed had ever heard of PrEP. Once information about PrEP was shared, most participants reported willingness to take PrEP if recommended by a healthcare provider. “This suggests to me that women are interested in PrEP but often are not aware of it or are not being counseled on how it might help them prevent acquiring HIV,” Adams says.


To get PrEP information out there, “Community engagement is key,” explains Oni J. Blackstock, MD, MHS, the assistant commissioner for the Bureau of HIV/AIDs prevention and Control for the NYC Health Department.


Blackstock developed and tested a pilot intervention that uses PrEP peer outreach and navigation to engage cis and trans womxn at mobile syringe exchange sites and at sex worker drop-in centers. “I learned that we can reach women at high risk for HIV and provide education about PrEP, however getting women to come to a clinic for a PrEP is a challenge. The findings suggested we bring PrEP to where women at highest risk are, and to bundle PrEP with other services that women at high risk need.”


So that’s exactly what she and the NYC Health Department are doing; they’re creating sexual health marketing campaigns that are designed to resonate with women of color, in the hopes of bringing PrEP to high-risk women. Already, they’ve implemented two successful campaigns.


The first campaign, “Living Sure”, encourages cisgender and transgender women – particularly women of color – to consider PrEP as part of their sexual health plan. It appeared in local newspapers, subway cars, subway stations, buses, and on social media.



In 2018, the Department of Health launched “¡Listos!”, a sexual health marketing campaign encouraging Latinx people to consider using PrEP as part of their sexual health plan. It is the Health Department’s first awareness campaign to be conceived of and largely released in Spanish. “Our ¡Listos! campaign also includes messages for women, ensuring we used messaging that was linguistically appropriate and culturally responsive to Latinas,” Blackstock says.



Still, more needs to be done, especially with healthcare providers who don’t see PrEP as a viable preventative option for womxn, or, who are completely unaware of the life-saving drug.


In 2015, the CDC reported that 1 in 3 primary care doctors and nurses hadn’t heard about PrEP. While the number is likely to have decreased in the past few years, there are still numerous healthcare professionals who do not know or refuse to prescribe Truvada to their patients. “There needs to be outreach to providers — both education and training —  on HIV and PrEP. Providers must engage their patients,” says amfAR Director of Government Affairs, Asal Sayas.


“Family planning providers, obstetricians/gynecologists, and primary care providers must be well-versed in taking a thorough sexual history, screening, treating for sexually transmitted infections, and discussing prescribing PrEP and PEP — all in a culturally affirming manner that empowers women to take control of their sexual health,” adds Blackstock.


The NYC’s Health Department PrEP and PEP detailing campaign is doing just that. The campaign involves one-on-one visits with women’s healthcare providers during which providers receive an updated PrEP and PEP Action Kit. The kits provide various education and tools to help high-risk patients acquire PrEP.


Undoubtedly, the NYC Health Department is ahead of the curve when it comes to HIV prevention and outreach for women. It’s necessary for other cities to follow suit.


“We won’t be able to end the HIV epidemic in New York City unless we end the epidemic among women,” says Blackstock. “So, a focus on developing and implementing effective women-specific initiatives are critical to this goal.”


Zachary Zane is a Brooklyn-based writer, speaker, and activist whose work focuses on lifestyle, sexuality, culture, and entertainment. He was formerly the digital associate editor at OUT Magazine.His work has been featured in Rolling Stone, Washington Post, Playboy, and more.