Last Saturday I spent a rainy afternoon tucked away in a basement in London’s trendy Dalston being captivated, moved and inspired by a new documentary on the HIV/AIDS epidemic in 1990’s America – HOW TO SURVIVE A PLAGUE!

The documentary marks the 25th anniversary of ACT UP! – the AIDS Coalition to Unleash Power- who fought against US government negligence and anti-gay prejudice to bring about treatment for people living with HIV.  Left in awe by the film- the sheer determination of the movement and their willingness to risk their lives to get justice-  I couldn’t quite believe it when Peter Staley  (one of the leading ACT UP activists) walked to the front of the room and started chatting to us! He is one of the most inspiring people I have ever met and living proof that activism works!

At 24, Peter Staley was diagnosed with HIV after seeing a doctor for a cold that just wouldn’t go away. Walking home from his work, as a Wall Street broker, Peter came across one of ACT UP’s first ever stunts and decided to join the group. At that time in the US the only medicine available to treat HIV was a drug called AZT, which cost around $10,000 per patient per year. In 1989 the group staged an action at the New York Stock Exchange, chaining themselves to the balcony screaming ‘$%&! your profiteering. We die while you play business’. A few days later the drug company who produced AZT, dropped the price by 20%!

In 1991 Peter decided that there needed to be a diversification in tactics and alongside a group of Harvard and Yale graduates formed an affiliated movement the ‘Treatment Action Group’ (TAG). The problem was that although they had got the price for AZT reduced, the drug proved highly toxic for a lot of people taking it meaning people found it hard to adhere to treatment. More research needed to be done, but at that time in the US severe government prejudice meant that these investigations were not considered a priority. President Bush suggested that the solution to the crisis was merely ‘a change of lifestyle’, this was in the face of an epidemic that increased from one single case in 1981 to 250,000 in the mid-90s! So TAG took it upon themselves to do the research and figure out what they needed and how they were going to get it! They worked with drug companies and pushed for more research and investigation into HIV medicines. Soon the authorities came to realise, in the words of one federal official, “they know more than we do”.


 In 1996 there was a breakthrough.  The FDA approved the first protease inhibitor (a drug that prevents the body from producing more of the HIV virus) and a new era of Highly Active Antiretroviral Therapy was born. The cocktail of drugs is described in the film as having the ‘Lazarus effect’ since within 30 days AIDS related symptoms seemed to disappear. Survival rate shot up and since then 7 companies now manufacture the drugs, which have saved 6 million lives.

The refusal of TAG and ACT-UP to take ‘No’ for an answer is a big reason why we have these drugs now. The issue today is how to get these drugs to the 16 million people in the world who need them.

Hearing Peter reflect on the movement, what we can learn from ACT UP is that getting ‘clued up’ and ‘adapting’ a campaign to reflect changes in priorities is the key to bringing about the change you want to see. If they could get the drugs developed then we can change the rules that prevent people from being able to access them.

Watch the trailer here  and visit  for your local screening. Also if you or your society or group want to put on a screening of the movie, drop me a line at Be informed, be inspired and be motivated by the fact that community action has the power to change the rules.