What made the AIDS advocacy so successful? It has been based on the principle: ‘Nothing about us without us’. But activists had to fight hard for this principle, to advocate for HIV to be taken seriously and destigmatized, for new drugs to be developed. The documentary “How to survive the plague” shows the inside story of how citizens and science tamed AIDS. It is an excellent example of science and evidence-based global health advocacy.

The theme of this year’s World AIDS Day is “Communities make the difference”. It is a great chance to acknowledge the critical contribution civil society and advocacy groups have made in the global fight against AIDS. Without them, 24 million people would not be on lifesaving anti-retroviral treatment today.

One such advocacy group is ACT UP. The story of ACT UP and their epic fight to get adequate treatment for HIV is captured by the documentary How to Survive a Plague, by David France, an Oscar-nominated filmmaker, and award-winning journalist and the author of the book of the same title.

The story is a gripping account of how activists in the 1980s, mostly educated, middle-class, gay White men with HIV or at risk of HIV, educated themselves to become their own researchers, lobbyists, drug smugglers, and how they forced the pharma industry, US government, funding and regulatory agencies to fast-track their response to the epidemic.

Everyone working in global health could learn something and get inspired by this movement.

 

What made AIDS activism successful?

Activists in the plague years invented modern patient advocacy by demanding and then securing a meaningful role for people afflicted with a disease in all areas of the research process. To do this, they first had to familiarize themselves with the state of the science — what was known and what was yet to be figured out. They became self-trained experts

They built on other movements – the HIV movement in the US was built on an already ongoing gay rights movement, people were already connected because they were gay, politicized, organized, and already in a kind of fight mode.

They used the fear and outrage – the HIV movement channelled the fear and anger of people infected with HIV, the most affected community.

They mobilized and organized – the HIV epidemic cut across class constituencies, irrespective of race, people could mobilize resources, and organize themselves. There were also people who were sophisticated with media, and connected with those who had wealth (e.g. celebrities).

They played good cop/bad cop – ACT UP’s innovation, according to David France is what they called their “inside/outside” strategy of training an “outside” battalion of activists shouting at the door to allow an elite “inside” team to enter. Civil disobedience was a key feature of what happened.

They knew their stuff – AIDS activists went well beyond staging protests and getting arrested. They educated themselves about every aspect of the disease, and demanded to become full partners in developing solutions. AIDS transformed the doctor-patient relationship. For the first time, you had a broad class of people who were doing their own research, who were looking at alternative therapies, who were questioning even the dosage of medications.

‘Nothing about us without us’ – became a key principle of AIDS advocacy. sActivists had to fight hard for this principle. They got involved in every aspect of the epidemic, from pharmaceutical R&D, funding of AIDS research, design and conduct of clinical trials, drug approval processes, drug pricing and access. The first ever research agenda was developed by the activists, not scientists. So, their advocacy was science and evidence-based. They also demanded greater transparency on every aspect of the HIV response.

AIDS transformed the relationship between citizens and the biomedical research institutions. If industry had spent billions of dollars on the drug approval process, they would not have gotten the same impact that the AIDS activists had.

People were very well versed in many different areas of science, policy, and research. People really made an effort to create ‘community experts’ irrespective of educational training.

 

Using the AIDS advocacy playbook in global health

AIDS activism in the US also inspired many other such movements across the world. The key question is how can those working in other areas of global health adapt and use the AIDS activism playbook? Not all aspects of the playbook might be transferable, but the core elements of a patient-led mobilization, inside/outside strategy, and science-based advocacy might be used.

According to David France, breast cancer advocates have tried to emulate the AIDS activism and it proved to be adaptable. They set up community advisory boards at all levels of the breast cancer establishment, lending their perspectives and knowledge to the challenge.

Fight against tuberculosis (TB), on the other hand, despite TB being the top-ranked infectious killer of humans, observes slow progress. A key reason is that affected communities are still struggling to claim a central role in the fight against TB.

See the documentary : How to Survive a Plague