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A Veteran AIDS Activist Has Déjà Vu From Ebola Panic

Members of the activist group ACT UP, which has fought for the rights of people with AIDS, held a demonstration in New York's Times Square in 1992.
Andrew Savulich
Members of the activist group ACT UP, which has fought for the rights of people with AIDS, held a demonstration in New York's Times Square in 1992.

The panic over Ebola in the U.S. gets a one-word comment from Gregg Gonsalves: "Crazy."

Actually, he has a few more words than that to say. In this week's online New England Journal of Medicine, Gonsalves co-authored an essaycalled "Panic, Paranoia, and Public Health — The AIDS Epidemic's Lessons for Ebola."

Gonsalves, who is co-director of the Yale Global Health Justice Partnership at the Yale Law School and Yale School of Public Health, has been an AIDS activist for nearly three decades, beginning as a member of ACT UP, the organization that fought for medical treatment, legislation and research policies to address the HIV epidemic. So he has a visceral reaction when he reads about a teacher resigning in Louisville rather than take a 21-day leave of absence after returning from a mission trip to Kenya — where there are no reported Ebola cases; or a 7-year-old girl barred from her elementary school in Connecticut after returning from a family trip to Nigeria.

NPR talked with Gonsalves, who himself is HIV-positive, about comparisons between the panic over Ebola in the U.S. and the panic and paranoia around AIDS in the 1980s.

What does this country's reaction to Ebola have in common with the reaction to AIDS 30 years ago?

Any of us who have lived through the '80s remember the hysteria and panic and paranoia against the high-risk groups, the four H's: homosexuals, Haitians, hemophiliacs and heroin users. Some states enacted quarantines. Kids [with HIV], like Ryan White, were forced out of school. The New York Times thought it was OK to put William F. Buckley's commentary on their op-ed page saying that "everyone detected with AIDS should be tattooed."

Is there an equivalent to the "four H's" as targeted groups regarding Ebola?

Well, they don't all begin with "H." But there is panic around immigrants and children of immigrants, around travelers and around health care workers.

Were health care workers who worked with AIDS patients also treated as pariahs?

Back in the old days of AIDS, it was health care workers that braved the fear and paranoia to take care of my friends who were sick and dying. Nurses like Kaci Hickox [the Maine nurse who defied a quarantine after returning from caring for Ebola patients in West Africa] are being targeted unfairly. Now, we're saying we're not going to let you target people who have cared for Ebola patients. Health care workers stood up for us then [during the early days of the AIDS epidemic], and now we need to stand up for them.

In your paper, you mention that during World War I, 20,000 women were quarantined behind barbed wire on suspicion of spreading syphilis and gonorrhea, though many had neither disease. AIDS also prompted unfounded fears and reactions. Now Ebola. It seems history has yet to learn from past mistakes.

The irrational and punitive measures deployed in the AIDS epidemic are revived for another disease. The first time it happens, it's tragic. The second time, it's farce. We cannot let down our guard.

ACT UP and other AIDS activist organizations are getting involved in efforts to tamp down panic over Ebola. Who would you like to see join them?

The scientific community and the medical community need to stand above the fray. Politics has invaded science. We've had conference calls with the New York City health commissioner, and half the people on the call were from ACT UP. It's ACT UP veterans who don't want to see this play out again. But if AIDS activists are the only ones doing this, there aren't enough of us. This is a threat to the professions of public health and medicine. Doctors, nurses, epidemiologists and everyone working in health have to take a more active role of citizenship. We've seen around the Affordable Care Act and abortion where issues of medical care and science have been distorted for political gain. We can't be passive much longer.

In your NEJM commentary, you and co-author Peter Staley talk about similarities between the two. What are the differences?

AIDS was a real epidemic in the U.S. Now, in the U.S., we have four cases total, and one death, from Ebola. Ebola in Africa is the real tragedy. It's almost grotesque that Americans have been fixated on this nonexistent threat at home when thousands die in Africa. The American public has turned a blind eye to the African Ebola epidemic. Stopping it there is what's going to stop it from coming to our shores. Our whole national discourse has been twisted into this narcissistic panic. The disproportionate reactions are entirely selfish and based on personal mis-measure of risk.

Copyright 2021 NPR. To see more, visit https://www.npr.org.

Susan Brink
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