AIDS is here to stay. At least for now…. It didn’t seem that way during the 1980s. As we learned more about HIV and its manifestations, the predominantly male and intervention-driven scientific world organized itself to find a solution within a decade or two. After all, the war against smallpox, polio and other infectious diseases had been won with medicines, vaccines and public health efforts. Well, here we are, way into the third decade, and despite the achievements, the pandemic continuous to grow. What lessons can we draw from the cumulative knowledge, organizational responses and manifestations of solidarity?
The first decade of AIDS was marked by fear, death and loss. AIDS was visible in the faces with Kaposi sarcoma and the wasting of the bodies. We feared the contagion, death, the loss of loved ones, the unknown. And among so much fear, we blamed others: the “4 Hs” (Haitians, hemophiliacs, homosexuals, heroin addicts), sex workers, … even monkeys. Conspiracy theories flourished to explain the origin of the virus: a biological weapon, a laboratory experiment gone wrong. But the first decade of AIDS gave birth to the very essence that made it a disease like no other. A powerful medical model was challenged by participation. A movement was created. Never again would patients be patient. AIDS forever changed the way health would be delivered.
The second decade of AIDS was marked by hope; hope for a treatment, a vaccine, a cure. Science took enormous strides. Antiretroviral therapies created miracles: the Lazarus effect, they called it. HIV became a chronic condition, not a death sentence. While a cure and a vaccine were still to be found, the benefits of the quest advanced all aspects of clinical care. The breath of fresh air that came with so many developments also fueled a stronger coalition. Communities began to take control and demand action. People living with HIV and AIDS showed their faces, let their voices be heard, and influenced program design and policy. Access to treatment became a unified call.
The ongoing third decade of AIDS has been marked by money. The unknown, stigmatized disease that nobody wanted to touch in the beginning of the pandemic came of age drawing the attention of global leaders. New public-private-partnerships such as the Global Fund to Fight AIDS, Tuberculosis and Malaria were created to unleash extraordinary levels of funding. The movement peaked with this expanded response but money did not buy a solution.
Health system strengthening is now the hot topic in global health platforms. It is not clear if the funding trend that will follow will be the result of new money or of reallocation of existing commitments. These decisions will have an impact on the future of the response to AIDS. Instead of waiting to retrospectively evaluate its dynamics, we could be proactively shaping the fourth decade of AIDS.
In a sense, we are coming full circle to the time when the gold standard was universal access to comprehensive primary care. Yet, as we revisit these concepts, I’m not sure if we have learned the lessons from how people, science, money and politics have influenced local and global health decisions.
During the last 60 years, we saw a paradigm shift from comprehensive health as a fundamental human right, to disease-driven vertical approaches. “Health for All by the Year 2000” was killed because this holistic approach was considered too expensive, too idealistic. After decades of testing different models (e.g., selective primary care, structural adjustment policy), we still have no definite guidance on how to make health systems work.
The response to AIDS is multisectoral, but health systems will remain at the forefront. And as someone who has lived the spectrum of responses since the beginning, I cannot say that money is not necessary. But is it all about numbers, technical soundness, scaling up, performance management, alignment, and donor harmonization?
I sorely miss the time when money did not drive agendas. I long for the passionate cries for equitable access, the compelling arguments that emanated from people’s lives, and the resourcefulness and sense of accomplishment that were generated by mass mobilization against all odds.
AIDS became a movement because the business of AIDS was about life, not money or technology or intellectual prowess. People transformed systems by constructing a collective vision, building upon social capital. As we head towards the fourth decade of AIDS, the response is suffering from movement fatigue. We need to rescue the inspiration that came from placing the human element, not the systems and the structures – much less the funding, at the center of the response. Back to basics is my call! Let’s inspire the technocratic and bureaucratic mindsets that will shape the 4th decade of AIDS with a moral imperative grounded by ethics, inclusion, equity, rights, and personal and collective determination.