Ending the HIV Epidemic Will Take More Than Medicine
For almost four decades, HIV has continued to impact individuals, families, and communities in the United States and around the world. And we've known that the HIV virus has specific biological routes of transmission but, like most infectious diseases, is clustered among society's most vulnerable to poverty, deprivation, and violence. So issues like stigma and discrimination, heterosexism, gender discrimination, poverty and income disparity, intimate partner violence, and racism and xenophobia converge to create the conditions that make HIV acquisition and transmission more likely.
But health care itself isn't evenly distributed. An individual or community's ability to access health services (which is impacted by the availability of services, health care costs, insurance coverage, and language barriers) may also contribute to the direct acquisition and transmission of HIV. In health care settings, cultural and systemic implicit (and for some, explicit) biases about race, sex, sexuality, gender norms, and others permeate among providers, influencing attitudes and behaviors towards these groups and undermining the quality and accessible care they could, and should, be receiving to maintain optimal health.
Direct HIV transmission and acquisition can be addressed, on some level, by the current tools we have in the HIV prevention and treatment toolkit; however, we have no tools in the toolkit currently to address the determinants of health that create and influence the conditions in which HIV transmission and acquisition occur.
For these reasons and many more, I do not believe that we will be able to end the epidemic utilizing the current array of approved HIV prevention options. Merely bringing these technologies to scale will not impact acquisition and transmission of HIV across all countries and all groups of people, if these activities are not paired with interventions that also address the conditions that increase their likelihood. An uncomfortable truth that often goes unspoken is that even if the current approved technologies were scaled up to ensure 100% access and coverage, many people would still neither accept nor take them. And some would still not have adequate access to them.
There are prevention products in the pipeline that -- if and when they are approved -- will offer an expanded buffet of options to individuals and communities. Among these will be an effective globally deployed HIV vaccine, which is one of our greatest opportunities to end the HIV epidemic. Studies of these tools require clinical trial support and participation by diverse communities. We know that there are populations that are underrepresented in HIV research. These are also the same populations that are disproportionately impacted by HIV and other adverse health outcomes, and the same populations who currently have significant drop-offs on the HIV care continuum, and many of the same populations with lower uptakes of pre-exposure prophylaxis (PrEP).
While the biomedical scientists publish countless research studies, and billions are spent to investigate technologies and biomedical prevention strategies to respond to direct acquisition and transmission of HIV, we must also continue to develop critical social and behavioral research science questions simultaneously, to guide our efforts and our pathway. Some of these questions include:
- How do we arm people with the appropriate and accurate information to make informed decisions about their support of, and possible participation in, these studies? This is particularly needed for persons who are not engaged in medical care or prevention services and have less access to accurate HIV and medical information.
How do we, through our research agenda, address historical trauma in communities of color, particularly among black, Latinx, and Native American persons, that has resulted in generations-old mistrust or distrust in the medical establishment, which contributes to adverse health outcomes in these groups?
How do we develop research studies about sex, sexuality, and sexual health that center desire, intimacy, and connectedness as opposed to "risk," particularly for black and Latinx gay, bisexual, transgender, and queer persons?
How do we develop studies that pair the implementation of biomedical HIV prevention technologies with metrics to assess how individual-level factors (e.g., attitudes and beliefs about research, HIV, and science) and community-level factors (e.g., the physical environment, stigma, discrimination, health care access/utilization) may serve as implementation facilitators or barriers?
How do we genuinely center the diverse lived experiences of black and Latinx persons, including gay, bisexual, transgender, and queer persons, as we develop and implement HIV prevention strategies, messages, and interventions?
Some of these questions have been addressed in the literature, but we must continue to ask these questions if we want to address the HIV epidemic, and general health and wellness needs, among black and Latinx populations.
In my professional experience, centering communities utilizing a community-based participatory or action model has been at the heart of my work. In research endeavors, my research commitment, inquiry, and interests are situated at the intersection of public health and social justice, with an intentional focus on the health of African Americans and LGBTQ persons, as well as HIV prevention and treatment focused on other key populations. Part of this ethos rests with the knowledge and belief that individuals and communities have inherent value and assets from which they derive resiliency, strength, courage, and determination to persevere even in the most oppressive environments.
We have come very far in reducing new HIV cases and slowing disease progression globally, but many places and communities remain heavily burdened by HIV and by the conditions that facilitate HIV acquisition and transmission, so the work must absolutely continue.
We are not at a place where we can, in good conscience, say we have all the tools necessary to end the HIV epidemic, because the epidemic is much more than just the actual virus -- it represents the conditions and environments that support its transmission and acquisition. It represents the systems of oppression, classism, racism, misogyny, sexism, patriarchy, colonialism, and subjugation that -- for decades, centuries, and longer -- have permeated societies, cultures, board rooms, and living rooms.
Biomedical HIV prevention research has laid a path toward ending the epidemic, and many biomedical advances have supported this journey, but behavioral and social science research must be paired equitably to ensure the data can be produced that can aid in addressing ecological, systems, implementation, and delivery considerations.
*Disclaimer: The commentary and opinions expressed here are the author's own, in his professional capacity. The author's opinion does not represent the official position of the HIV Vaccine Trials Network (HVTN) or the University of Washington.