Lessons From Decades on the Frontlines of the HIV/AIDS Pandemic
As we mark World AIDS Day on December 1, I have been reflecting on the HIV/AIDS pandemic fight and its relevance to today’s COVID crisis. Having conducted research on HIV/AIDS for the last 30 years, and now leading a large multi-site study to stem the opioid overdose crisis amid the COVID-19 pandemic, I’ve observed how health inequities, racial, sexual, and gender disparities, and social/structural factors remain barriers to access to HIV testing and treatment for many Americans.
By barriers, I mean unemployment, poor schools, police brutality, chronic exposure to discrimination and racism, and widespread lack of health insurance. Stigma and fear of discrimination still cause some people to avoid learning about their HIV status and obtaining medical treatment.
When I first began conducting AIDS research, treatments to combat the virus were few and ineffective. A medical breakthrough came in 1996, when antiretroviral therapy (ART) was introduced. Later drugs made viral loads undetectable and HIV transmission less likely to occur. HIV/AIDS began to be viewed as a chronic disease.
Despite progress in treatment, racial disparities in healthcare persisted. Racial and ethnic minorities in this country were more likely to experience delays in HIV care and less likely to receive ART at earlier stages in the disease, especially people in homeless shelters, with criminal justice system involvement, or undergoing community supervision.
Today, vulnerable groups face multiple health problems and their pre-existing conditions put them at higher risk for the COVID-19 pandemic. The same disadvantaged groups that had significant barriers to AIDS care are now disproportionately affected by COVID-19.
My HIV prevention work taught me how to reach underserved groups, how to create an action plan to mobilize communities to use evidence-based data to inform healthcare policy and decision-making, and how to implement those decisions to link people to care in resource-stretched communities.
The COVID vaccine will be available soon. I suggest four strategies to ensure that vaccine distribution and access to testing, treatment, and care reaches underserved communities who were ignored in the early years of the HIV/AIDS pandemic.
Strategies for COVID Vaccine Distribution
Equitable access to vaccines should be a human right. These rights are also in everyone’s health interest: 60-70% of the population needs to be vaccinated to achieve population immunity. To achieve this immunity level in an equitable manner, vaccinations must be available at non-traditional sites.
I have conducted HIV and drug use prevention projects in soup kitchens, homeless shelters, and community supervision programs with people who had difficulty accessing treatment. After studying women in emergency departments who experienced sexual or physical violence, I came to see that barriers to accessing healthcare endangered their lives. I learned that to reach these populations, prevention interventions need to be placed at convenient locations in communities at risk.
Vaccinations should be available in homeless and domestic violence shelters, reproductive health services clinics, housing projects, soup kitchens, drug treatment programs, harm reduction sites, jails, prisons, and alternative-to-incarceration programs, to name a few. Settings like these must be considered for equitable COVID-19 vaccine distribution and testing.
To equitably distribute the vaccine and immunize the public through a two-shot protocol in non-traditional settings requires training the immunization teams to administer the vaccine in a non-threatening, non-stigmatizing, and respectful manner. In several HIV studies, we developed, tested, and implemented culturally specific interventions to change drug use and sexual behaviors. We hired professionals from the communities that we were trying to reach.
Matching staff backgrounds to the culture and languages of the community was important because we were attempting to strengthen the community’s values and convey the notion that partners should not only want to protect each other from HIV, they should also want to protect their community.
All staff were trained on cultural competencies, empathy, and respect for people who had a different lifestyle in order to reduce stigma.
During the HIV pandemic, the introduction of new medications caused confusion for some patients and a mistrust of pharmaceutical companies by others. HIV medication changed many times over the years with new side effects. It was this mistrust of medical staff and drug companies that we tried to dispel.
Distributing a COVID-19 vaccine will require wide-scale direct information campaigns with maximum transparency about the vaccine. Past experience shows that misinformation on vaccine components, possible harm to the patient or future generations, as well as inadequate information on vaccine efficacy, has affected public willingness to be immunized. Messages about the vaccine should be tailored to the barriers perceived by the patients.
The media campaigns should be translated into different languages with culturally relevant images and use different technologies to reach the right people in non-traditional settings. We used these approaches to promote HIV testing and treatment and biomedical prevention technologies. Recently, we also used these tactics to reduce stigma against people who use medication to treat opioid use disorder, placing positive messages on buses, coffee cups, and billboards. Similar tactics will reduce stigma against vaccines.
Community member involvement in the HIV pandemic—such as political advocates from ACT UP, people with HIV as peer educators at Gay Men’s Health Crisis, and Housing Works—were crucial in instigating political, social, and policy changes. This involvement also improved access to health and social services.
To address the opioid epidemic in the HEALing Communities Study (HCS) that I oversee in New York State, we also engage community coalitions. The study is designed to reduce opioid overdose deaths by 40% over 3 years in 67 highly burdened, heterogenous communities across New York, Massachusetts, Kentucky, and Ohio.
Community coalitions include service providers, policymakers, people with lived experience with substance use, and families who have lost members due to overdose. Together, these coalitions plan how to reduce the opioid epidemic in their counties.
This approach brings a variety of opinions into the decision-making process on what is best for each community. Using evidence-based data and approaches to inform community decisions will be vital in deploying the COVID-19 vaccine as well.
As I reflect on these last 30 years, I’m amazed at the progress we’ve made by meeting people where they are, ensuring inclusivity by addressing social and structural barriers, and engaging communities most affected. I am hopeful that these lessons will guide future COVID-19 immunizations and care strategies, in focusing on the person. Our lives depend on it.
Nabila El-Bassel is a University Professor and the Willma and Albert Musher Professor of Social Work. She is also the director of the Social Intervention Group, a multi-disciplinary center focused on developing and testing prevention and intervention approaches for HIV, drug use, and gender–based violence, and the principal investigator on the HEALing Communities Study in New York State, a research project from the National Institutes of Health that aims to reduce opioid-related deaths.