News and Insights
The Long-Term Power of Health Advocacy and Education
July 31, 2024
I was 14 years old when the newspapers and broadcast outlets began reporting on a set of mysterious infections appearing in — and often rapidly killing — members of the gay male community in 1981. Today we look back and know that this was the start of the AIDS epidemic, a crisis that has resulted in nearly 90 million infections and 42 million deaths globally. Much has been learned in the intervening decades about the biology of HIV/AIDS, and this knowledge has been used to develop multiple drugs that can reduce viral load in infected individuals and can be used prophylactically to prevent infection for individuals at risk.
A new publication in The New England Journal of Medicine now reports that twice-yearly injection of a drug approved for the treatment of HIV infection provided 100% protection against infection in young women and girls in a large, double-blind, Phase 3 trial conducted in South Africa and Uganda. While additional studies are ongoing to determine if similar protection is provided in other populations, this finding — which comes after decades of failed efforts to develop a successful vaccine against HIV — is a reminder that we should never give up hope when opportunities to protect and improve human lives remain.
It also is a reminder of the power of advocacy. In 1983, a small group of gay men who were working to combat stigma and to advocate for people with AIDS in their local communities gathered in Denver to share strategies and establish a path that would protect the rights and dignity of those living with the condition and ensure the inclusion of these voices in AIDS-related policy decision. The outcome of this gathering, known as the Denver Principles, was a manifesto intended to establish rights and responsibilities for everyone touched by or engaged in fighting the epidemic. It also provided an empowering definition of the AIDS community:
“We condemn attempts to label us as ‘victims,’ a term which implies defeat, and we are only occasionally ‘patients,’ a term which implies passivity, helplessness, and dependence upon the care of others. We are ‘People With AIDS.’”
The manifesto also marked the beginning of disease advocacy and activism. Organizations such as the AIDS Coalition to Unleash Power (ACT UP) and Gay Men’s Health Crisis (GMHC) drew attention to the crisis through political and cultural protests and information campaigns. They also raised money to support people living with AIDS, fund litigation to protect these individuals’ rights, and provide HIV testing and counseling services. AIDS advocacy organizations met directly with local, state, and federal legislators to share stories that helped showcase the humanity of the community and to demand financial, social, and legal support for its members. Banners and T-shirts with slogans such as “Silence=Death” and the wearing of a red ribbon allowed members within and outside the community to demonstrate their support for people living with AIDS.
Today, there is a rainbow of ribbons demonstrating support for those living with various cancers, genetic diseases, and mental health conditions, those recovering from addiction, and members of many other communities tied together by a shared experience and finding strength and hope in taking collective action toward a common goal.
The important progress in AIDS prevention published in NEJM also reminds us of both the critical need to continue advancing and investing in infectious disease research, and the challenges of protecting public health in the age of social media and disinformation.
In the 1980s, a young Anthony Fauci, who was spearheading the NIH response to the AIDS crisis, worked closely with the AIDS activist community to use rigorous science as a tool for helping to overcome the bias and stigma that posed barriers to investment in and access to potentially life-saving therapies. Forty years later, stigma and bias around COVID-19 vaccines, social distancing, and masks, were used to undermine Dr. Fauci’s scientific credibility and create chaos in the public health response.
The COVID-19 pandemic also sadly demonstrated that the global health community and individual countries remain unprepared and at high risk for emerging and evolving pathogens. Politics, stigma, and bias remain barriers to effective preparedness, especially with regard to pathogens that pose greater risks for low- and middle-income countries and marginalized populations. This is evidenced by the inequitable distribution of COVID-19 vaccines and resources and the growing concern around the threat of mpox infection, which gained greater visibility only after the 2022-2023 outbreak in countries where the virus is not usually endemic.
Those of us in the scientific communications arena have an important role to play in allying with diverse advocacy communities, amplifying their voices, and providing compelling and factual information that educates and inspires others to lend their support. The engine for change that produced the exciting advances in AIDS prevention has been gathering momentum for more than 40 years. For those living with other diseases, and to prevent the diseases yet to come, we must walk together, no matter how long the road seems to be.
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