More than a patient: Community leadership in the HIV Response

More than a patient: Community leadership in the HIV Response

By Shaun Mellors, Director: Knowledge & Influence, International HIV/AIDS Alliance and IAS Member

On 2 May 1983, the first AIDS candlelight memorials were held in San Francisco and New York simultaneously, under the theme of “Fighting for our Lives”. It was the first sign that the response to HIV would be much more than a medical issue; it would be an issue that brought together communities to shed tears, to commemorate, to support each other, to react and challenge the seemingly unforgiving epidemic.

Three years later, in 1986, a group of activists living with HIV stormed the stage at the National HIV Conference held in Denver, United States and created what was to become known as the Denver Principles.  These Principles were a direct response to the stigma and scapegoating being levelled at those with AIDS diagnoses. It simply stated that, “We 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.’”

It was this assertion of self-determination that paved the way for an informed and engaged “patient response” and challenged the way that we, as people living with HIV, were perceived and described.

I received my own HIV diagnosis a few months later, on 24 December 1986. Little did I realize how relevant and central to my HIV journey these two moments would become. Much of the early response to HIV was centred on trying to understand the virus, a very scientific focus with little attention on the critical role that communities, especially those living with HIV, would play in that response.

The human-rights championed by the nascent HIV community in the Denver Principles in many ways formed the foundation for the creation of the GIPA Principle (Greater Involvement of People Living with HIV/AIDS), which was adopted by 42 Heads of Government at the Paris AIDS Summit in 1994. This not only recognized the important role that personal experience had to play in the HIV response, but also formalized our rightful role in decision-making on a structural level, including governmental policy towards effective treatment approaches and appropriate funding and support to achieve such efforts.

Ten years after the candlelight memorials, we continued to witness health and rights coming together at the international level. People living with HIV across the globe coalesced community-based activist groups like ACT-UP, Treatment Action Group and the Treatment Action Campaign (TAC), to name a few, taking direct action to secure life-saving treatment for millions of people. In my home country of South Africa, TAC courageously and skilfully challenged the notion that patents and AIDS denialism should stand in the way of the basic human right to health. When TAC’s demands were not met, they sued the South African government and won. This was done through civil disobedience campaigns, persuading the Cabinet to overrule the President and distributing medication through their own community and activist networks.

Today, South Africa, has the largest anti-retroviral treatment programme in the world. This legacy of AIDS activism has shown us that action led by people living with HIV and our allies have served as the linchpin in HIV epidemiology and survival rates.

However, in an ironic sort of way, the advent and (perceived) accessibility of ART has diminished the fire, the passion, the drive, the urgency in the HIV response – understandably so. Yet, these biomedical and treatment access advances, essential as they have been, are not nearly enough. Young people continue to die at alarming rates: between 2005 and 2012, AIDS-related mortality decreased by 30% for all age groups except for adolescents, who experienced a 50% increase. It is unsurprising that young people are losing patience and are ready to take charge of the health services that have been failing them.

In my own work, I have witnessed the specific influence community-led programming can have in advancing the design and delivery of impactful HIV services. Young people for example have been the driving forces in developing peer counselling, integrated HIV/SRHR, psychosocial services and essential linkages to care that reflect their needs and their lives. Further proving that community-led programming helps ensure that those most affected are in a position to promote our rights for our everyday lives.

Now more than ever, we need to awaken a sense of urgency.  It is our ability to stand up as a united and undeniable voice that led to the successful outcomes in Durban, South Africa in 2000, which prevailed in unlocking treatment access against AIDS denialism and we did it in 2012 in Washington, DC United States, overturning the travel ban of people living with HIV to enter the country. It was our unyielding belief in the humanity of all, that steadied our push for access to treatment, to challenge stigma and reasserted out rights to dignity.

Community is just as powerful now as it was then and our fight is not over.