Dec. 1 marks World AIDS Day. Since 1988, World AIDS Day has worked to raise awareness about HIV/AIDS, including generating efforts to prevent the spread of HIV and support those living with HIV. This year’s World AIDS Day theme, “Communities make the difference,” is intentionally broad, and suggests that ordinary people, in addition to health care providers, must be part of an effective response to HIV/AIDS.
Despite the focus on communities-based change, this World AIDS Day will likely once again highlight the pharmaceutical innovations that have brought us closer to the end of AIDS than we have ever been. This will come in the form of acronyms like PrEp (pre-exposure prophylaxis) and U=U (undetectable = untransmittable). In each case, the dominant message is that medicine is the answer to HIV/AIDS. But equating medicine and the end of AIDS not only blinds us to how health is more than the absence of disease, it also erases the vitally important role people living with HIV/AIDS play in their own health as well as their expertise in helping to end AIDS nationally. When people seek to become undetectable or take PrEP, they do so for themselves and their potential partners. The knowledge they accumulate–whether in terms of how bodies work, how health care systems operate, or how to navigate government or pharmaceutical industry assistance–provides lessons for their own survival, and has tremendous potential to promote health and care for the communities they inhabit.
The lack of recognition of people living with HIV/AIDS as agents of action has been compounded by the fact that HIV/AIDS in the United States continues to be an epidemic that disproportionately affects black and brown people, people living in poverty, and young people, all groups that are consistently distrusted as sources of knowledge. One need only compare the map of HIV/AIDS prevalence in the United States to one of people living in poverty to see that the state of AIDS disproportionately follows lines of racial and economic inequality. Further aggravating these structural inequalities, we have lost access to comprehensive and age-apropriate sex education: in 2014 only 41 percent of schools required instruction on HIV prevention for students, down from 64 percent in 2000.
Taking stock of HIV/AIDS epidemiological patterns reveals that the inequities of the disease are connected to structural violence, defined in part as unequal access to resources, inadequate education, and a lack of health care infrastructure. If we are truly going to end AIDS, there must be a set of responses that meet the scope and force of the structural violence that has made AIDS look the way it does. This includes better accounting for the conditions people and communities most impacted by HIV/AIDS face, and solutions that address the social determinants of health.
We should support the critical role that people living with HIV/AIDS play in detailing and addressing structural violence. They have been at the forefront of every medical, social and political advance made in the fight against the global AIDS pandemic. This was true in the 1990s when pregnant women put their bodies on the line to test how drugs could intervene in mother-to-fetus transmission of HIV and when AIDS activists insisted that housing is a precondition to health care. The impact of their efforts must be recognized with more than praise. One possibility would be to create a job corps that pays people who contribute their expertise to ending HIV/AIDS in the communities around them.
Models of this already exist. Peer education, whether among young people or men who have sex with men, works on the principle that people are more likely to change their behaviors when they learn from others with shared backgrounds or experiences. Evidence from organizations like Illinois Caucus for Adolescent Health suggests that Youth Educators can creatively and effectively teach sexuality education to other young people. They transmit valuable knowledge and skills to their peers, using language and examples that ring true.
One group of activists and artists based in New York have begun to imagine what an HIV doula might do. The collective hosts writing workshops to share survival skills through drafting poetry and making art. Here, people living with HIV and those impacted by it serve as companions and navigators for one another. All participants imagine ways to promote health and well-being that move well-beyond adhering to medicine regimens.
Allocating more money for promoting and expanding peer education opportunities in under-served communities, in the form of salary rather than one-time cash payments to workshop leaders, would be a key component of any AIDS job corps developed.
Each of these examples demonstrate that people’s experiences living with HIV/AIDS are powerful and valuable resources in the fight against the epidemic. They show how resources must be better allocated to historically disenfranchised communities, and how treatment, including medicine, experiential wisdom, and social support, must be better distributed across communities. If communities are truly to make a difference after this World AIDS Day, we have to let them define what difference means.
Jennifer Brier is a historian and Lorena Garcia is a sociologist, both at the University of Illinois at Chicago, and 2019-2020 Public Voices Fellows with the Op-Ed Project.