Looking Forward and Looking Back: 30 Years of AIDS

This past Sunday marked the 30th anniversary of the discovery of AIDS. The epidemic itself likely started in the 1960s, but it only 30 years ago that a few astute physicians realized that a new disease was spreading.

The first report of the new disease was published on June 5, 1981. It described a cluster of a rare pneumonia among five previously healthy gay men in Los Angeles. Two died, and all five showed signs an profound decline in immune function.

Additional reports of immunodeficiency among gay men in San Francisco and New York — as well as among injection drug users, hemophiliacs and Caribbean immigrants — soon followed. What would turn out to be the greatest public health emergency since the Black Death was recognized. Despite this, the initial public response to the crisis was muted.

This muted response was due, in part, to politics. With Ronald Reagan’s election in 1980, federal funding for public health was sharply cut or reallocated. AIDS also primarily struck marginalized members of US society. The disease was seen as a punishment for an unhealthy or sinful lifestyle, and the earliest patients — gay men and injection drug users — were routinely demonized by religious figures and politicians.

The mainstream media failed to raise a warning flag, at least while AIDS seemed to be limited to the gay community. The first article to appear in the LA Times was published in April 1982, ten months after the disease was first identified and in response to the first Congressional hearings on the emerging epidemic. The article was entitled “Epidemic Affecting Gays Now Found in Heterosexuals”.

Thankfully, the public response to the AIDS epidemic has improved dramatically over the last thirty years. But as someone who has devoted much their career to these issues — as a public health researcher studying treatment and prevention, and as an ethicist and policy expert looking at the public and private response to the AIDS epidemic — I often ponder what might have been had we mounted a more vigorous public response to AIDS during the early years of the epidemic.

More than half a million people in the US have since died, and one million more are currently living with HIV, the virus that causes AIDS. How many of those deaths could have been prevented had the federal government mounted a more vigorous response to the epidemic? How many of those HIV infections could have been avoided?

Looking forward, I also wonder whether we need to re-think some of our current policies in order to prevent future HIV infections and AIDS-related deaths. Giving medication to individuals as soon as they are diagnosed with HIV can reduce the likelihood that they will transmit the virus that causes AIDS by 96%. Nineteen of every twenty new infections could be prevented by screening and treating everyone at risk. However, this would require policies that promote routine testing and make treatment available to those who need it. Unfortunately that is not the case.

Low-income patients often lack access to HIV medications, and state-run programs that provide low-cost treatment are being slashed by cash-strapped legislatures. Almost 9,000 people with AIDS, the people who need these drugs in order to survive, lack access. Life-saving treatment isn’t even available to those that need it, let alone for those who are not yet ill but who want to take these drugs in order to protect their partners.

Thirty-four US states have also passed HIV criminalization laws, which make it a offense to knowingly expose an uninfected individual to HIV. The only successful defense is either a claim of disclosure (often hard to prove) or ignorance of one’s HIV-positive status. Seeking HIV testing may thus make a person criminally liable for otherwise legal conduct: consensual sexual activity.

HIV criminalization statues discourage at-risk individuals from seeking testing because of fears of legal prosecution, despite the fact that testing and treatment could not only preserve their lives but also reduce the likelihood that they will transmit the virus to others. Ill-conceived budgetary decisions hamper efforts to provide treatment of those who are infected, despite the fact that early treatment is one of the most effective ways to prevent the spread of AIDS.

Clearly, dramatic changes in our current approach to the AIDS epidemic are called for

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on June 9, 2011. It is also available on the WAMC website. Portions of this commentary also come from an article co-written with Prof. Udo Schuklenk, Ontario Research Chair in Bioethics at Queen’s University in Kingston, Ontario. That article appears in a forthcoming issue of the International Journal of Law in Context.]


About Sean Philpott-Jones

A public health researcher and ethicist by training, Sean holds advanced degrees in microbiology, medical anthropology, and bioethics. He is currently Chair of the Bioethics Department at Clarkson University's Capital Region Campus and Director of the Bioethics Program of Clarkson University-Icahn School of Medicine at Mount Sinai, and Director of two Fogarty-funded programs to provide research ethics education in Eastern Europe and in the Caribbean Basin. Until his term expired in August 2012, he served as Chair of the US Environmental Protection Agency’s Human Studies Review Board, an advisory panel that reviews the scientific and ethical aspects of research involving human participants submitted to the EPA for regulatory purposes.
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