Panic, Paranoia, and Public Health — The AIDS Epidemic’s Lessons for Ebola, by Gregg Gonsalves, B.S., and Peter Staley

Enviado por Fernanda Aguilar Perez

The New England Journal of Medicine – For those of us who lived through the early days of the U.S. AIDS epidemic, the current national panic over Ebola brings back some very bad memories. The toxic mix of scientific ignorance and paranoia on display in the reaction to the return of health care workers from the front lines of the fight against Ebola in West Africa, the amplification of these reactions by politicians and the media, and the fear-driven suspicion and shunning of whole classes of people are all reminiscent of the response to the emergence of AIDS in the 1980s.

The first decade of the AIDS epidemic spawned a similar kind of hysteria, predominantly targeted at people living with HIV–AIDS, but also directed against what the Centers for Disease Control and Prevention (CDC) unfortunately called the four Hs, the four high-risk groups: homosexuals, heroin addicts, hemophiliacs, and Haitians. Various politicians called for quarantining of anyone who tested positive for HIV, and commentator William F. Buckley infamously penned an op-ed in the New York Times saying that “everyone detected with AIDS should be tattooed.” There was an AIDS-quarantine ballot initiative in California, and various states threatened or passed conditional quarantine measures. Fortunately, such measures were used infrequently. Far more common then and now is the use of criminal law to target people who may have exposed their partners or others to HIV or transmitted the virus to them; between 2008 and 2013 alone, there were at least 180 such prosecutions.1

People living with HIV–AIDS in the 1980s and 1990s also faced other kinds of discrimination, including the loss of employment and housing, as well as outright violence, including assault and murder.2,3 Some HIV-positive children were excluded from school; two such cases — those of the three Ray brothers in Arcadia, Florida, and of Ryan White in Kokomo, Indiana — received national attention.

Although there is not an Ebola epidemic in the United States, the first case of the disease in Dallas, the subsequent infections of health care workers there, and the case of a New York City–based doctor working with Médecins sans Frontières (MSF) have resulted in proposals for 21-day quarantines of health care workers returning from West Africa and other people coming to the United States from the region. Prominent scientific and medical institutions have criticized state-based protocols that impose isolation and quarantine on asymptomatic health care workers and travelers, in contradiction to the CDC’s protocol, and the overly broad application of these measures to people with no known contact with patients with Ebola. Though it is difficult to assess how many people in the United States are currently in quarantine for Ebola, New York, New Jersey, Connecticut, Georgia, California, Maine, Louisiana, the District of Columbia, Illinois, and Florida have all enacted such measures. Connecticut until recently had nine people in quarantine, none of whom had any documented exposure to patients with the disease.

The ACT UP “quarantine camp” float at New York City’s Gay Pride March, June 28, 1987.

AIDS activists have come out strongly against the quarantines in New York, New Jersey, and Connecticut, either in the press or in direct correspondence with the governors. The argument against these policies is based on the lack of scientific grounds for the quarantine criteria, the likelihood that unnecessary restrictions on those returning from the region will dissuade health care workers from volunteering to help fight the epidemic, the implicit and erroneous public health message sent by these quarantines that asymptomatic persons are a danger to their communities, and the inconsistency in applying the policies to health care workers who’ve had contact with patients with Ebola in Africa but not those who’ve seen patients in U.S. facilities. In addition, we believe that by rejecting scientific evidence, substituting unsubstantiated claims for facts, and undermining the credibility and authority of both the CDC and the National Institutes of Health, these quarantine protocols risk damaging our country’s ability to respond quickly and efficiently to serious public health threats in the future. Fighting epidemics requires national coordination and leadership, not ad hoc responses by 50 states pulling in different directions under the sway of partisan politics.

Those of us who are HIV-positive and have survived all these years owe a deep debt of gratitude to health care workers. None of us would be alive today if it were not for their generosity and passion for their work and their willingness and even eagerness at the start of this plague to treat some of our country’s most marginalized populations, including gay men, drug users, and sex workers. This is a perfect moment for us to again show our thanks to the thousands of doctors and nurses who stood by us during the terrible early years of the AIDS epidemic. The least we can do now is to stand in solidarity with them as some politicians and journalists target them for opprobrium and discrimination and try to lock them up on baseless grounds.

History is repeating itself, as the irrational, punitive measures deployed in the AIDS epidemic 30 years ago are revived for another disease, this time a rare hemorrhagic fever responsible for only a few local cases. And the response to AIDS was far from the first such occurrence. During World War I, for example, under the Chamberlain–Kahn Act, 20,000 women were quarantined by the federal government, and thousands more by local authorities, on suspicion of spreading syphilis and gonorrhea, though many who found themselves behind barbed wire had neither disease.4

Why has it been so easy, again and again, to slip into this kind of reaction to a public health issue, and why has it been so difficult for promoters of evidence-based practice to find remedies for it? The power to enact quarantines resides with the states, and the governors of New York, New Jersey, and Connecticut have set policies in motion through their departments of health without any oversight. Some people have suggested that this practice has to change. Cornell University law professor Michael Dorf has argued that “quarantine amounts to an extraordinarily serious limitation on liberty . . . . Accordingly, judicial review of government officials’ claims that a quarantine is necessary to protect public health should not be a mere rubber stamp.”5 As of the end of October, a judge in Maine had invalidated the quarantine order on Kaci Hickox, a nurse who worked with MSF in Sierra Leone, saying that she “currently does not show symptoms of Ebola and is therefore not infectious.” Allowing rigorous, independent judicial review before a quarantine is ordered to ensure that it is the least restrictive way to protect health may be an important component in the reform of state quarantine laws.

But another lesson from the AIDS epidemic is that we cannot let down our guard. We all have to become activists if we are to protect the public health from being used as a tool to serve primarily political purposes, as it has been over the past few weeks in the United States.

Disclosure forms provided by the authors are available with the full text of this article at NEJM.org.

This article was published on November 5, 2014, at NEJM.org.

Source Information

Mr. Gonsalves is the codirector of the Yale Global Health Justice Partnership, Yale Law School and Yale School of Public Health, New Haven, CT, and an AIDS activist; Mr. Staley is a longtime AIDS activist.

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