Fighting to End AIDS as an Epidemic: Activism, AIDS, and Political Change
by Mark Harrington, Treatment Action Group
3 February 2019
The nearly forty-year long period of time since the outbreak of the AIDS pandemic in 1981 has seen over twenty-five million deaths from AIDS, immeasurable suffering and loss, and the birth, growth, and flowering of a powerful human movement of solidarity, resistance, resilience, and remembrance which has accomplished amazing changes in science, society, and politics. People with AIDS and people with HIV infection have played and play key leadership roles in this activism, which was founded in the People With AIDS self-empowerment movement which emerged from the first national meeting of people with AIDS in the United States, and led to the 1983 Denver Principles1, which “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’ and go on to ask all people to “Support us in our struggle against those who would fire us from our jobs, evict us from our homes, refuse to touch us or separate us from our loved ones, our community or our peers, since available evidence does not support the view that AIDS can be spread by casual, social contact.” They recommended that People with AIDS (PWAs) “Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies, Be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations [and] Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.” The Rights of PWAs include: “To as full and satisfying sexual and emotional lives as anyone else; To quality medical treatment and quality social service provision without discrimination of any form including sexual orientation, gender, diagnosis, economic status or race; To full explanations of all medical procedures and risks, to choose or refuse their treatment modalities, to refuse to participate in research without jeopardizing their treatment and to make informed decisions about their lives; To privacy, to confidentiality of medical records, to human respect and to choose who their significant others are; and To die – and to LIVE – in dignity.”
On these principles of self-empowerment, dignity, and rights sprang a host of community-based organizations to care for people with AIDS and their loved ones, starting with Gay Men’s Health Crisis (GMHC) in New York in 1982 and now spread around the world. They led to activist movements such as the AIDS Coalition to Unleash Power (ACT UP), first in New York and now again globally. Groups like GMHC provided compassionate care, legal advice, treatment and prevention information, medical care, and meals to PWAs. ACT UP led national movements to streamline and modernize the regulation of clinical trials of new treatments for HIV and its opportunistic complications, ultimately paving the way for revolutionary changes which led to the approval of triple combination antiretroviral therapy (ART) in 1996. ART has saved the lives of millions of people with HIV and prevented millions of new HIV infections. Currently over 20 million of the world’s 38.5 million people living with HIV are receiving life-saving ART, and millions more are eligible to take two ART drugs in combination as pre-exposure prophylaxis to avoid becoming infected by HIV. People on successful ART with an undetectable viral load are incapable of passing HIV on to other partners (“Undetectable = Untransmittable”).
The AIDS crisis brought a focus on deep structural forces of homophobia, racism, sexism, fear of drug users, and xenophobia, forces which any response to the AIDS crisis must contend with and fight, so that people with AIDS and those at risk can lead healthy lives of dignity and with the social support they need. This in turn has created momentum towards combatting legal and structural barriers to the full participation of gay people, people of color, drug users, prisoners and ex-prisoners, migrants and immigrants, transgender persons, and others who are among the groups worst affected by the pandemic. In fighting AIDS, we are fighting for the equal rights to life, health, research and the fruits of research, for all human beings.
While there is still no cure or safe, effective vaccine to stop AIDS, by using ART and PrEP we can greatly lower, and in some places bring an end to, new HIV infections, and keep all people living with HIV healthy and incapable of transmitting HIV. We must continue to invest in research for better prevention, treatment, a vaccine, and a cure, and in the meantime work to dismantle social and structural barriers which perpetuate the epidemic. This means working to expand HIV care, treatment, and prevention so they are universally available; end the criminalization of sexual transmission of HIV, ending the war on drugs, establishing clean syringe exchange, harm reduction, and safe injection facilities for injecting drug users, establishing housing for people with HIV, and ending stigma and discrimination against people with HIV, LGBT people, drug users, people of color, and migrants and immigrants. It means fully funding AIDS research programs, reducing prices for AIDS treatments and prevention tools, supporting national and state AIDS Drug Assistance Programs, continued support for the President’s Emergency Plan for AIDS Relief (PEPFAR) and the Global Fund to Fight AIDS, Tuberculosis and Malaria, and resisting efforts to cut funding for these programs by the current U.S. administration. Everyone has the capacity to become an AIDS activist and work to end this epidemic. Please join us in working towards a world without AIDS. ~