Thirty years ago this year, the AIDS epidemic began – only at the beginning it did not seem much like an epidemic. A few people – homosexuals – were noted to have come down with unusual symptoms in New York, San Francisco and Los Angeles and many got so ill they died. It is often a small article tucked away in pages of the New York Times that is cited as the first public “notice” of the new disease. It didn’t have a name. It was not known if it was a communicable disease. There was no test. And except for those involved in public health, or gay men in urban areas who had their antenna up, not very many people really noticed. By the end of that first year in the U.S. approximately 389 cases were diagnosed and 150 people died.
By the following year, the number of diagnosed and dead had tripled and the first person I knew to die of AIDS was one of them. Still, not much was known about what was happening and the epidemic was still a burning and nearly hidden ember to the public – the only problem was that it lay around so much timber. Over the next few years, in the nation’s large cities, there was an increased and by 1985 America has had over 22,000 cases diagnosed and over 12,000 deaths. That year, Rock Hudson was diagnosed and all of a sudden, America realized there was a problem.
The next decade taught many of us the meaning of the words “epidemic” and “pandemic” as the virus spread beyond the initial foothold among a few groups of people to women and children around the globe. The next decade would be one of extreme pain for those who were diagnosed and for their families and care partners. There were no effective treatments for the underlying cause – finally identified as a virus and eventually given a name – there were only treatments for the awful opportunistic infections – many of which had prior to AIDS been seen only rarely – and some of them were not very good. In the earliest days of the epidemic, people often only lived a few months after a diagnosis and by the mid-1980s often only a few years.
By 1997 the U.S. had seen a cumulative total of nearly 550,000 diagnoses and nearly a quarter million deaths. And then, the world changed.
The introduction of anti-viral medications that actually did something about the virus stemmed the mortality of the disease in the United States dramatically within their first year. A mechanism for ensuring access to the drugs in the U.S. was put into place that provided a safety net to people needing the medications called the AIDS Drug Assistance Program (ADAP) – a program run by states and funded with a mix of federal and state funds. In addition, with the gravity of the global pandemic apparent, the U.S. helped fund access around the globe to medications. The effect has been stunning, not only stopping the death, but apparently, impacting the transmission of the virus itself, making the drugs not only a treatment, but a preventive. The Report on the Global HIV/AIDS Response released yesterday shows a stunning 15% reduction in new cases and 22% reduction in deaths over the past decade.
Today is World AIDS Day and organizations around the globe are aspiring to an AIDS-free generation. For those with a memory of the years prior to 1997, such a vision seems nearly impossible. And in some ways, the public perception of AIDS has returned to its pre-1985 framework – it does not seem as immediate as it once did thanks to the introduction of wide spread access to life-saving drugs.
But there is another contagion at work around the globe that threatens that vision. In an era of budgetary concerns and fiscal restraint, funding will be a key factor in future successes. Recently the Global Fund to Fight AIDS, Tuberculosis and Malaria announced that it would have to suspend new grants until 2014. They aren’t cutting back, but they aren’t expanding.
The status quo will not be good enough. The debt crisis is severe, but it should not be a basis for turning the clock backwards. When it comes to AIDS/HIV, the future cannot resemble the past – not in the least.
Thank you for this short history of the AIDS epidemic. It hits the string of low points that I remember, too, as well as the few high points we can credit in our shared history.
I’ve been thinking about different perspectives on the history of an illness, and, in anticipation of World AIDS Day, I read Susan Sontag’s two essays, “Illness as Metaphor” (about TB & cancer, published in 1977) and “AIDS and Its Metaphors” (published in 1988).
I also spent time on João Biehl’s site, particularly his ethnography of AIDS therapies in Brazil:
Will to Live
“Will to Live tells how Brazil, against all odds, became the first developing country to universalize access to life-saving AIDS therapies–a breakthrough made possible by an unexpected alliance of activists, government reformers, development agencies, and the pharmaceutical industry. But anthropologist João Biehl also tells why this policy, hailed as a model worldwide, has been so difficult to implement among poor Brazilians with HIV/AIDS, who are often stigmatized as noncompliant or untreatable, becoming invisible to the public. More broadly, Biehl examines the political economy of pharmaceuticals that lies behind large-scale treatment rollouts, revealing the possibilities and inequalities that come with a magic bullet approach to health care.”
Sontag’s essays include references to the European experience of TB, cancer, and AIDS, particularly quoting from French public awareness campaigns, but less about the African, South American, or Asian experience. That’s why I turned to Biehl and would love to hear about other sources of critique and history from across the world.
Switching gears, going from literature and anthropology to numbers, think about the basic math of health care delivery in the U.S., beautifully, devastatingly summarized by Peter Margolis of Cincinnati Children’s:
.5 x .5 = .25
As he recently explained:
“The dominant paradigm of chronic care delivery in the US is characterized by health “services” “delivered” to relatively passive patients or “consumers” in clinician-mediated encounters during using knowledge that is produced by researchers and clinical experts. In this current system, physicians provide only 50% of indicated care and patients adhere to about 50% of what is recommended. The result is a system where only about 25% of patients achieve optimal care, despite spending that far exceeds other industrialized countries. What would outcomes be like if doctors and patients got what they needed 90% of the time?”
For people living with HIV/AIDS, of course, the implications are more grim:
Only 28% of Americans with HIV are getting optimal care
Read the full article if you have time – the new shared history of this illness is being written today.
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