Reflections on 30 Years of AIDS

TOC summary: Although the end of the epidemic is not yet in sight, the remarkable response has improved health around the world.

first time what became known as acquired immunodeficiency syndrome (AIDS). The accompanying editorial suggested that the illness might be related to the men's sexual behavior.
A month later, the MMWR reported additional diagnoses of P. carinii pneumonia, other opportunistic infections (OIs), and Kaposi sarcoma (KS) in homosexual men from New York City and California. These articles were sentinels for what became one of history's worst pandemics, with >60 million infections, 30 million deaths, and no end in sight.
This 30th anniversary year of the first description of AIDS is also the 15th anniversary of the introduction of highly active antiretroviral therapy (ART). Henceforth, AIDS will have been a treatable condition longer than it was the inevitably fatal disease first recognized. We offer highlights and reflections from a predominantly global perspective on 3 decades of collective experience with AIDS.

Early AIDS Surveillance and Epidemiology
To investigate this apparent outbreak, CDC investigators developed a simple surveillance case definition for what was first called KS/OI. The definition focused on certain OIs or KS in otherwise healthy persons and was used to establish a national reporting system. In light of new knowledge concerning AIDS and its underlying cause, the case definition was modified over time, but early surveillance indicated that an epidemic was under way and, in retrospect, had begun several years before the first reports. Retrospective testing of stored serum specimens from hepatitis patients in Los Angeles documented human immunodeficiency virus (HIV) infection as early as 1979.
The initial risk groups identified were men who have sex with men (MSM) and injection drug users (IDU). Field investigations and surveillance activities demonstrated sexually linked cases in MSM and in persons with hemophilia and transfusion recipients, implicating transmission by male-to-male sexual contact as well as through blood and blood products. Cases in heterosexual persons and infants indicated that transmission could also occur through heterosexual contact and from mother to child.
Within <2 years, the essential epidemiology of AIDS-groups at risk and modes of transmission-was established, although debate about transmission through blood and blood products continued for several months after CDC believed the evidence was clear. In March   Page 3 of 11 1983, the US Public Health Service published the first recommendations for AIDS prevention, including a recommendation that members of risk groups limit their numbers of sex partners and not donate blood or plasma. Although these recommendations were made before the etiologic agent, HIV, had been identified, they initiated AIDS prevention efforts and have largely stood the test of time.
As evidence accumulated that AIDS would not be confined to MSM

AIDS as a Metaphor for Emerging Infections and the New Global Health
Social and environmental change, increased public health awareness, and improved diagnostic tools led to the emergence and recognition of several new pathogens in the last third of the 20th century. After a prolonged period of complacency with regard to infectious diseases, in 1992 the Institute of Medicine published an influential report on emerging infectious diseases.
This term referred to conditions that were increasing in incidence in human populations or threatening to do so, were newly introduced or detected, or were recognized as being linked to a chronic disease or syndrome. No agent and disease better exemplify this concept than HIV and AIDS.

AIDS and the Globalization of Science, Research, and Practice
A positive development in the response to AIDS has been its effect on science and the globalization of research and practice. Retrovirology and immunology became well-supported disciplines whose practitioners interacted productively with workers in other subjects such as

The AIDS Response, Nothing for Us without Us
Activism and advocacy profoundly influenced the response to HIV/AIDS. Outside the gay community, initial concern about HIV/AIDS was largely limited to scientists tracking the epidemic or searching for a cause. In the face of stigma, discrimination, and indifference to their friends dying, affected communities organized to provide prevention advice, care, and support. Much has been written about the different ways that HIV/AIDS has been addressed, compared with other sexually transmitted infections, and the term AIDS exceptionalism has been coined. For example, specific consent forms and counseling were required before HIV testing, and limits were placed on sharing patient names between health jurisdictions for HIV surveillance purposes. These practices responded to concerns of affected communities that infected persons would be subject to discrimination such as termination of insurance or employment. Mandatory HIV testing, unhelpful and discriminatory, was largely prevented, but exceptionalist views may also have delayed expansion of HIV testing in clinical settings and thus access to care, including in the Southern Hemisphere. As HIV became treatable and surveillance practices successfully protected confidentiality, much of the exceptional approach to HIV gradually diminished. Vigilance is required to ensure that resources are deployed to the right places in a timely fashion, rather than to general population groups that are politically safer but at lower risk.
Characteristically, it has taken AIDS to bring the existence of marginalized groups such as Page 10 of 11 sexual minorities to attention in low-and middle-income countries and to highlight their vulnerability and needs.

AIDS and the Future
We should not expect a single leader or intervention to deliver an abrupt end to the HIV/AIDS pandemic, yet the tide can be turned with principled pragmatism, adequate resources, trust in communities, and science as our guide. At times the process is slow. For example, US government support for needle and syringe exchange to prevent HIV in IDU did not happen until Barack Obama became US President (2009). But a middle way has to be found between arguments for the magic bullet of the moment and calls for unrealistic social and behavioral change with regard to sex and drug use.
We (the authors) have 4 priorities: 1) defining the best ways to use existing interventions to interrupt HIV transmission, 2) continuing the focused search for new knowledge and interventions, 3) resolving how best to use HIV testing and antiretroviral drugs for prevention as well as treatment, and 4) ensuring sustainability and commitment for the global response.
Aspirations for social justice, human rights, and decency must motivate the response while epidemiology and surveillance provide technical direction as well as evaluation. True country and community ownership of the response is essential because solutions wanted more by donors or governments than by affected communities themselves almost never succeed.

Conclusions
Although we continue to face many challenges while responding to HIV/AIDS, we must also acknowledge the enormous scientific, social, and human achievements of the past 3 decades.

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The epidemic has severely tested many countries, especially those with the most limited resources, yet these countries have generally responded with decency, compassion, and good judgment. Despite the human and financial costs, millions of infections have been prevented and millions of life-years saved. The response to AIDS will be a benchmark against which responses to future health threats will be compared.
Many themes of the HIV/AIDS epidemic were captured by Albert Camus in his classic novel The Plague, and the expectations expressed therein largely apply. Inevitably, the story of HIV/AIDS "could not be one of final victory. It could be only the record of what had to be done, and what assuredly would have to be done again in the never-ending fight against terror and its relentless onslaughts." An enduring frustration is that we will not know how the story of AIDS will finally end because the epidemic will outlast us. A perpetual challenge will be living up to the commitment and courage of those who went before-health workers, scientists, and affected persons-who faced the unknown and took risks. In general, 30 years of AIDS confirm that there is indeed "more to admire in men than to despise." And while the epidemic continues, the world of global health has changed for the better.
Kevin M. De Cock is director of the Center for Global Health at CDC in Atlanta.