The announcement that HIV Prevention Trials Network (HPTN) had two successful studies on long-acting technologies (LAT) to prevent HIV—HPTN 083 and 084—came with much excitement. Populations most impacted by HIV could possibly have an even greater opportunity to prevent HIV. LATs provide for potentially easier adherence, fewer side effects, and are less noticeable, which creates more privacy for users than pre-exposure prophylaxis (PrEP) in pill form. Yet, as the prevention toolbox continues to grow, there are still uncertainties on the effectiveness, cost, accessibility, and other structural barriers of long-acting technologies. This raises the question: just how prepared are we really for long-acting technologies? Ending the HIV epidemic requires everyone to have access to LATs regardless of race, geographic location, gender identity, income, and immigration status—ensuring that communities everywhere have the same chance of reducing their likelihood of contracting HIV. We spoke with some leading voices in HIV prevention to get their take on what we need to do to prepare for LATs.
Establishing trust within communities
Progress toward increasing LAT access starts with building trust. As we have seen with the development of the COVID-19 vaccine, mistrust influenced vaccine hesitancy among underserved communities, particularly among Black people living with HIV. Before LATs are available, medical providers must foster trust within communities. Medical providers must provide community members with accurate and accessible information about LATs, including side effects and possible challenges that come with their use. For communities to believe in and feel comfortable with accessing LATs, researchers and manufacturers must do a better job at being transparent and trustworthy. In a recent interview with TAGline, Sarit Golub, a professor at City University of New York said: “In order to build trust, we need to act trustworthy.” Lessons learned from the roll-out of once-daily oral dosage of PrEP show that, to date, uptake of PrEP in marginalized communities in the South is low.
“We need to get rid of the assumption that we continue to do business as usual. We must start by meeting and educating people around their options in the role that these options can play in the context of their lives,” Matthew Rose, the Director of the U.S. Policy and Advocacy at Health GAP, said in an interview. “Injectables will meet the same fate as everything else if we don’t roll out a new way of engaging people.”
No matter how effective LATs are, researchers must intentionally engage with community members who stand to benefit the most from using LATs. Sarrit Golub notes, “We should see community members as ‘targets’ of our public health system. We need to recognize they are ‘agents’ of their own health and that an agentic [an individual’s power to control his or her own goals, actions, and destiny] mindset is one that centers community power and autonomy.”
No population left behind in research
Biomedical prevention research has historically excluded populations such as cis-gender and transgender women. Black women are consistently excluded when it comes to biomedical prevention. From the moment PrEP was introduced, Black women were left out. “Today, Black women are the least likely to take PrEP. This can’t be the case with long-acting technologies. We must make sure the language speaks to women. Women must see themselves in this from the beginning,” Gina Brown, Director of Strategic Partnerships and Community Engagement (SPaCE), said. “The same efforts that have been put into engaging Black gay, bisexual, and same-gender-loving men in prevention have to be replicated with Black women.”
Although HPTN 084 avoided the missteps made by Gilead with F/TAF for PrEP—for which no research was done in cisgender women and transgender men at the time of U.S. Food and Drug Administration approval—we must ensure that efficacy trials for LATs continue to cover all of the major HIV exposure risks. We must include people with current or a history of injection drug use in efficacy trials. For real-world effectiveness studies and demonstration projects, we must make it the norm to immediately and fully scale-up studies that intentionally look at the unique barriers to access for all major vulnerable populations, including transgender and gender-nonconforming individuals, people of color, cisgender women, and people who use drugs.
We also cannot forget about the rural South. There is a difference between the HIV epidemic and health care access in urban cities in the South—such as Atlanta, Houston, Dallas, and Miami—that distinctly differs from access in the rural South. Non-urban counties in the South have higher rates of new HIV infections compared to non-urban counties in other regions. Rural residents have limited access to PrEP, although the need for PrEP providers is evident because the South has the highest proportion regionally of PrEP-eligible persons living a 60-minute drive away from the nearest PrEP provider. Rural populations in the U.S. are generally underserved by HIV prevention services that offer HIV and sexually transmitted infections (STI) testing, don’t get a sufficient supply of free condoms or individual prevention services, and are less likely to have PrEP providers than those in urban cities. Even with the implementation of PrEP, the South has still felt the burden of the HIV epidemic for years. Integrating LATs in both the urban and rural South successfully will require a collaborative effort among key stakeholders, health departments, and other service providers.
Preparing for challenges through clear communication
Like most new innovations, long-acting technologies will have their challenges. On a community level, one challenge is ensuring that health information is provided in a way that is understandable. Generally, knowledge on PrEP is low in underserved communities. Therefore, the marketing of LA injectable PrEP must be creative. Perhaps this means veering away from the biomedical term “PrEP” to something more comprehensible. When developing materials, health communication specialists must tailor the medical information for low-literacy settings. The lead-in phase required before starting long-acting cabotegravir (LA-CAB) injections bears a challenge for people using this specific treatment. Although LA-CAB proved more effective than emtricitabine/tenofovir DF (Truvada) in preventing HIV infection, users must take oral cabotegravir for five weeks and then start their injections. The delay in starting injections may be a challenge for people who struggle with taking their medication daily as prescribed.
Concern also surrounds the effectiveness of the injection once drug levels begin to wane; a few participants in a study acquired HIV after delayed injections. We will need to walk the fine line with overinflating the challenges of any prevention modality to the point of discouraging uptake, a mistake made often by healthcare professionals with oral PrEP. Healthcare professionals downplayed their significance to the point of losing community trust. We must be prepared to mitigate unintended negative outcomes.
While some clinics are known for providing quality services to patients—particularly those owned and led by members from the most vulnerable communities—this is not the reality for all. Racism and provider bias have negatively impacted community members’ experiences with accessing PrEP. Implementation of LATs require follow-up visits, ongoing health education, and culturally humble providers who can clearly communicate about potential side effects. Providers should allow patients to make informed decisions about whether LATs are the right choice for them.
Creating an equity framework
LATs must be affordable and accessible to all communities. For this to happen, funders and policymakers must address inequitable
LAT distribution head-on.
In an interview, Sarit Golub said, “Funders must hold implementers accountable for equity metrics, not just volume metrics. In other words, any measure of quality or success in outcomes must examine not just how many new individuals are adopting a new prevention strategy, but whether adoption patterns are substantially reducing inequitable distribution in biomedical prevention adoption overall at an agency-, health system-, or jurisdictional-level.”
Dismantling systemic racism
2020 taught us many lessons, underscoring that systemic racism is a public health issue. “There is literally no way that long-acting injectables enter the world and not be part of the racist system. The system is pervasive. It has long been part of our society,” Matthew Rose said. “What we can do is we can try to ensure equity by shifting the paradigm—putting people of color in decision-making authority over the roll-out and program generation.” All communities must have access to LATs, and policymakers have an obligation to make sure of this.
As LATs begin to enter communities, we must move toward dismantling systemic racism. Healthcare facilities need to offer cultural sensitivity training to doctors that provide services to Black, Indigenous, and People of Color [communities]. Additionally, senate leaders need to directly infuse resources to communities of color, including local community-based organizations. In keeping with the Denver Principles and the rallying cry, “Nothing about us without us,” more people of color should be in leadership positions to make decisions for their communities.
Abraham Johnson, MPH, is the HIV Community Engagement Officer of Treatment Action Group (TAG).
Reprinted with permission from TAGline. treatmentactiongroup.org/resources/tagline/tagline-october-2021