‘Change is possible and … human beings, correctly mobilised, can be stronger than the inertia of the governments and other institutions that they have created’
Thomas Weiss and Anthony Jennings (1983)
There are two narratives in the history of HIV and AIDS. One is a story of success. In the mid- to late-1970s, medical doctors in the Democratic Republic of Congo (then Zaire), North America and Europe began to note the emergence of patterns of symptoms unusual in the demographic profile of those affected, symptoms and conditions which led, inexorably, to death. By the early 1980s, these symptoms were recognised as having a common, as yet undiscovered, cause and were given the name acquired immune deficiency syndrome, or AIDS. What led to death – the breakdown of the immune system – was known, but not why the system was breaking down in people who should otherwise be healthy. The answer to that question came within a few years, when the virus was discovered, allowing for testing to be developed to identify those who had been infected, and which blood products contained the virus. At the same time, prevention strategies were being devised, funded and rolled out, focusing on prevention (education programmes on how to protect against transmission through sex; needle-exchange and disposal, and safe-injection programmes to protect against transmission through intravenous drug use; and changes in medical practice and development of new equipment to protect against transmission through health interventions such as blood transfusion, operations and injections). For around two decades, a diagnosis of HIV infection was a death sentence. But from the late 1990s, anti-retroviral (ARV) drugs were developed and continued to be developed, that offered a lifeline to those living with HIV: the possibility of long (normal, even) life-expectancy through managing the condition.
The story of success is real. Within the space of around four decades, a highly complex virus, capable of rapid mutation and spread, has been identified; and a disease that killed without exception transformed into a chronic condition that can be managed with appropriate treatment. That treatment, so expensive just over a decade and a half ago, has fallen in price and the number of people with access has risen from 7.7 million in 2010, to around 21 million today. There is no vaccine, but new ways of using anti-retroviral drugs through practices such as PrEP have created a vaccine-like approach to protection and prevention. AIDS-related deaths have fallen by 48% since 2005. New infections are also falling, by aound 11% since 2010. In 1996, total funding for HIV and AIDS stood at around $292 million: in 2016, some $19.1 billion was made available.
The other story is one of stumbling, slow and conflicted progress; of poor decisions by governments, or governments refusing to acknowledge the scale of the challenge until it was too late; of stigma that led to exclusion, rejection, suffering, violence and even murder; of organisations and institutions who sought to blame individuals, casting their serostatus as evidence of sin as well as infection. It is a story of institutions and scientists competing for power and prestige rather than focusing on the needs of those most affected, of donors resisting recognition of the scale of the problem and slow to respond with the investments needed. The achievements, such as they are, have been built on the back of repeated failures, obstacles, and resistance to action by institutions and the powerful.
The advances that have allowed a fatal disease to be turned into a chronic and manageable condition are wonderful, but when only 53% of the global population living with HIV are still without access, almost all in some of the poorest countries of the world and themselves comprised of the world’s poorest and most marginalised people, we cannot call the roll out of ART a success. And whilst funding has increased exponentially over the past two decades, it is still not at the levels required to respond effectively to the epidemics. Donors have consistently failed to meet targets. Despite investments, despite best practice models, despite the number of organisations engaged in this area of activity, still 1.8 million people were newly infected with HIV in 2016, still 1 million people died from AIDS-related illnesses, and still around 17 million people do not have access to ARVs. Some countries continue to restrict or limit entry of those living with HIV. Stigmatisation has been reduced, but not eliminated. And still some groups and individuals fear violence as a result of their HIV status.
These narratives are not contradictory, or in conflict with each other. They reflect the realities of HIV and AIDS (and beyond that, the realities of all efforts to improve peoples lives and make meaningful, positive change) which is that progress has not come about because of the good will of governments, international organisations, research institutions and other formal actors: but has been the result of the pressure put upon those actors by civil society organisations, by affected communities, and by the strength of will of those living with HIV who have pushed and fought for their needs, wants and rights, and the needs, wants and rights of loved ones, to be recognised and responded to.
Many governments resisted rolling out treatment programmes fully, and only did so when taken to court by civil society organisations and activists. Others had to be pressured by direct action and protests, shamed into responding. Denialism of all kinds was resisted and challenged by national activists and global solidarity movements. Laws stigmatising (intentionally or not) those living with HIV were only changed or dropped when challenged by those affected. The drop in prices for those vital drugs came because international protests showed the scale of the crisis and the moral strength of their demands, and could no longer be resisted (though there is much still to be done here). For millions of those who have been affected, care and support has not come from the state, or international NGOs, but from within the community: the communities that were the sites of stigmatisation and discrimination were also the sites of tremendous bravery, fortitude and resilience.
So whilst we can rightly celebrate the huge seismic shifts in the landscape of HIV and AIDS since the 1980s, and recognise the enormous strides the global community has made over the successive decades, we need to remember that these successes came because of the action and will of people determined to bring about change, to shake a global community out of complacency. Whilst we can celebrate, rightly, progress made on World AIDS Day, we must use that day to push institutions and governments to ever further action.
HIV and AIDS remains a major health problem for many parts of the world. It is becoming a chronic, manageable condition for those lucky enough to have been born into parts of the world where that support has been put in place. But it remains the biggest killer in sub-Saharan Africa. As ever, efforts to roll out treatment, to provide the necessary care and support, to ensure scientists keep researching on vaccine development and new drugs, will rest not on the goodwill of governments, but on protest, resistance, direct action and solidarity of the people. The struggle is the reason for the success, and on this day we should think of those who gave their all in forwarding and advancing that struggle. Any success we can talk about in relation to HIV and AIDS is their legacy.