Today is World AIDS Day – a good time to remember that it was our communities’ activism that was crucial in getting the AIDS crisis taken seriously in the first place.

One example is ACT UP – the AIDS Coalition to Unleash Power.

The first ACT UP group emerged from a public meeting in New York in 1987. Larry Kramer, one of the founders of Gay Men’s Health Crisis, asked audience members if they’d be interested in taking a more radical approach to the AIDS crisis.

A few days later, on March 24th, 1987 ACT UP held its first demonstration, outside Trinity Church on Wall Street. Seventeen people were arrested.

A flyer was distributed with the following demands:

1. Immediate release by the Federal Food and Drug Administration of drugs that might help save our lives. These drugs include: Ribavirin (ICN Pharmaceuticals); Ampligen (HMR Research Co.); Glucan (Tulane University School of Medicine0; DTC (Merieux); DDC (Hoffman-LaRoche); AS 101 (National Patent Development Corp.); MTP-PE (Ciba-Geigy); AL 721 (Praxis Pharmaceuticals).
2. Immediate abolishment of cruel double-blind studies wherein some get the new drugs and some don’t.
3. Immediate release of these drugs to everyone with AIDS or ARC.
4. Immediate availability of these drugs at affordable prices. Curb your greed!
5. Immediate massive public education to stop the spread of AIDS.
6. Immediate policy to prohibit discrimination in AIDS treatment, insurance, employment, housing.
7. Immediate establishment of a coordinated, comprehensive and compassionate national policy on AIDS.

In the face of the sustained intransigence from the Reagan administration, it seemed wildly optimistic.

And yet, whether it was coincidence or otherwise, two months later the Federal Drug Administration issued revised drug approval regulations. These regulations created the concept of ‘Investigational New Drugs’ (INDs) – essentially, drugs that had yet to complete the lengthy FDA approval process – and  allowed them to be made available, “to persons with serious and life threatening illnesses, for whom no comparable or satisfactory alternative drug or therapy is available.”

Of course,it was nowhere near ACT UP’s demands, but it was, arguably, some FDA recognition that the existing system wasn’t working.

ACT UP continued to ramp up the pressure – and not just in New York. A new template for AIDS activism had been established. In consequence, ACT UP groups emerged across and beyond the USA. By the early 90s there were more than 140 ACT UP chapters around the world.

There is a detailed study of both the US government response and our communities’ responses to HIV/AIDS in my downloadable book Gay in the 80s. Full details are available here.