A pandemic anniversary: 40 years of HIV/AIDS

In June, 1981, when that CDC report was published, I had just graduated from college, with an uncertain interest in medicine, and a keen interest in men. I was dating a farmer who had spent the previous winter in San Francisco. We met up at a men's gathering in March, 1981. Around a campfire, Scott, my boyfriend, was being teased about the men he had been with in that past San Francisco winter. “Not this year”, he said. “There was something really awful going around, and it seemed to be only hitting gay guys.” Only a handful of the men around that fire would survive the years ahead.

The 15 years between the emergence of AIDS and the development of effective antiretroviral therapy (ART) in 1996 were searing. It soon became clear that the disease was not restricted to gay and bisexual men, although that early association, and the stigma and shame attached to it, would limit the crucial early responses to its spread.

In the USA, a cohort of people with haemophilia who received pooled plasma products were virtually all infected before HIV was identified and a test developed to screen blood products. This group included an Indiana schoolboy named Ryan White, whose struggle to attend school became a wake-up call to the potency of AIDS stigma. The retrovirus that was the causative agent was finally identified in 1983 in a landmark paper by virologist Françoise Barré-Sinoussi and colleagues. That discovery soon led to the first HIV test and the recognition, by 1985, that HIV infection could be asymptomatic. What seems obvious now was shocking then. I was a medical student in Brooklyn, New York, by 1985, terrified as so many were, and my then lover and I both got tested soon after that first test became available. My test was negative. My lover Ed's was not. He would succumb to pulmonary Kaposi sarcoma in 1991, 5 years before the advent of effective therapy. He was just 31 years old.

Those early years were marked by heroism and despair. Ronald Reagan was the US President and the enduring association of AIDS and homosexuality meant that his administration was pitilessly slow to respond. At the first White House press conference on AIDS in 1982, aides made anti-gay jibes while noting that about a third of reported cases were fatal. The inadequate response, the absence of any effective therapy, and the slow pace of research generated a fierce wave of activism. Media savvy, passionate, and galvanised by watching friends and lovers die, AIDS activist movements brought potent new tools to the fight against HIV. Activists targeted entities that had rarely faced such public challenges, such as the US Food and Drug Administration, the pharmaceutical industry, and unresponsive or hostile governments, including, most infamously, the AIDS denialist administration of Thabo Mbeki in South Africa. Activists educated themselves about everything from trial designs to antiviral mechanisms. They fought for and gained seats at the table—and changed the way medical research has been done ever since.

It would take hundreds of clinical trials of multiple agents and combinations to achieve effective treatment—the first triple-drug ART that worked. Some commentators called it the “Lazarus effect” as people rose from their deathbeds. This was 1996. I was working in Chiang Mai, Thailand, on the severe HIV/AIDS epidemic underway across the region. HIV had spread initially among the region's injecting drug users, but quickly became an infection of young sexually active men and women—with devastating consequences for Thailand, Myanmar, Vietnam, and Cambodia. For people in the region, and, indeed, for most of humanity, the “Lazarus effect” was a distant rumour. The first successful trial results were presented at the 1996 International AIDS Conference in Vancouver. As the study outcomes were presented, with those beautiful survival curves showing real and sustained benefit, I sat in the audience and wept with relief. But we would have no treatment for most people living with HIV for years to come.

A new reality quickly emerged. Most of the HIV patients on ART were in high-income countries. But most people living with HIV were in low-income and middle-income countries (LMICs). This painful period, from 1996 to 2003, was the height of the loss of lives from AIDS. Sub-Saharan Africa was by far the most affected region. AIDS care was then costly, complex, and challenging. Yet the idea that some would live, but most would die, based largely on geography, was morally and ethically unacceptable. It was at another International AIDS Society Conference, in Durban, South Africa, in 2000, that our movement was judged, fittingly, by a man living with HIV. Justice Edwin Cameron of the Constitutional Court of South Africa made a resounding case that the world had to act against this injustice to stop the needless dying. It was a profound call. And yet it seemed impossible that rich nations would invest the sums needed to make HIV treatment available worldwide. Few expected George W Bush's 2003 State of the Union Address to mark a pivotal change. Yet it was. Bush announced the US President's Emergency Plan for AIDS Relief (PEPFAR). By 2005, with the creation of The Global Fund to Fight AIDS, Tuberculosis and Malaria, and with PEPFAR, the needed billions began to flow.

What followed was unprecedented. A global advocacy and political struggle to dramatically reduce the cost of ART. A commitment to treat, for life, millions of people. The annual cost of therapy in the USA or Europe was then some $22 000, and that eventually came down to $50 per year in LMICs, making treatment feasible on a vast scale. Death rates declined. Mother-to-child transmission slowed. New and better drugs, and eventually more potent preventive tools, were developed through a massive public sector investment in HIV research. Indeed, when the US National Institutes of Health sought trial sites for the COVID-19 vaccine trials in 2020, it turned to the HIV research networks and trial sites. Until COVID-19, the HIV research effort was the largest in history devoted to a single disease.

Today, we find ourselves in a challenging period. The world's attention had already moved away from HIV/AIDS as the disease shifted from almost certain death to a chronic, manageable condition. Activism, having achieved so many of its demands, shifted to a broader focus on health-care access. Funding levels were sustained, but there was a growing sense that only more equitable health systems could manage the long-term burdens of millions on therapy. Universal health coverage became a focus in global health. And HIV increasingly became an infection of more marginalised communities: sex workers, men who have sex with men (MSM), transgender persons, people who inject drugs, adolescents, and prisoners and detainees. Indeed, in 2019, most new HIV infections worldwide were in these populations, and the stigma, human rights abuses, and limited access to HIV services that had plagued the emergence years continued to be stubborn obstacles to saving lives and pandemic control. After 40 years, we still cannot provide basic public health interventions like harm reduction, needle and syringe exchanges, and drug treatment for millions of opioid-dependent people. We still focus on police harassment and abuse of sex workers, when it has been clear for years that decriminalisation and empowerment of sex workers of all genders are effective for HIV prevention. And we still have too many places where it is difficult or impossible for MSM and trans persons to access HIV services in safety and dignity. These social and structural realities have perpetuated the pandemic, not addressed its drivers, and on these vital fronts we have made far too little progress in 2021.

And now we will be long unpacking the impacts of the COVID-19 pandemic on HIV. It is clear that 2020 saw global declines in HIV testing, prevention, STI services, and increases in unplanned pregnancies, gender-based violence, and so many of the social determinants that we know impact HIV outcomes. Yet, four decades of HIV experience have benefited the COVID-19 response. First, many leading scientists in HIV pivoted swiftly to COVID-19 work and helped lead their countries' efforts. Second, the HIV clinical trial infrastructures were rapidly engaged in research on COVID-19 vaccines and therapeutics. Third, the precedent in the efforts to make ART available globally, including in the lowest income and most fragile states, is also vital for ensuring equitable access to COVID-19 vaccines. The AIDS movement too saw that geography was destiny, and pushed back hard against the structures, including trade agreements and intellectual property rights, that were limiting life-saving access to too few.

The HIV/AIDS pandemic is far from over. Like many who survived those terrible early decades, I've found my commitment to addressing HIV/AIDS sustained by the enduring love of those I lost. And now we are in a new pandemic, also far from controlled. Perhaps two shared lessons can be gleaned from the suffering caused by both. We know we needed sustained investment in science to develop effective therapies and prevention tools. But without global human solidarity, we would never have made HIV treatment accessible for most people living with the virus. The science of COVID-19 vaccines has been spectacular, but we will need that solidarity, and the passionate global advocacy that marked the HIV response, if we are to reach global vaccine equity and access and defeat this next pandemic. Time has not lessened the sting of the early decades of AIDS. But what was achieved in fighting HIV/AIDS was truly remarkable. And we will need that wisdom and heart in this, yet another, pandemic year.