Steven Petrow covered the HIV/AIDS epidemic for more than two decades and wrote one of the first books about people with AIDS, “Dancing Against the Darkness: A Journey Through America in the Age of AIDS.” He also writes The Washington Post’s Civilities column.
Editor’s note: This article has been updated since its original publication.
There have been only three confirmed cases of, and one death from, Ebola in the United States. But a related condition is spreading much faster: Americans nationwide are showing signs of an epidemic of fear, all too reminiscent of the stigmatization, dread of contagion and panic of the early years of HIV/AIDS. I would know: In the 1980s and 1990s, I was living in San Francisco — a gay man at risk of contracting the disease, an AIDS hotline volunteer and a journalist covering the emerging epidemic.
In recent days some have called for quarantining people arriving from West Africa, a move public health officials say would only drive those at risk underground. These proposals echo efforts like those of Sen. Jesse Helms (R-N.C.), who called for a “quarantine of those infected” with HIV in the 1980s. In the end, science-driven AIDS policies trumped political grandstanding and scaremongering.
Today, some politicians have urged travel bans on flights to and from the affected countries, which “won’t keep Ebola contained and away from American shores,” says Tom Frieden, head of the Centers for Disease Control and Prevention.
Similarly, in 1987 the Department of Health and Human Services, “at a time of widespread fear and ignorance about HIV,” in the words of the Associated Press, banned those with the virus from entering the United States. When President Obama four years ago formally lifted the ban, which had been selectively and strategically enforced, he explained that its legacy had proved opposite to its stated intention: Instead of halting the spread of HIV, it resulted in fewer people being tested, which helped spread the disease.
After it was announced Oct. 12 that a nurse in Dallas had become the first known case of Ebola transmission in the United States, anxiety started to spill over. A doctor posted online: “I am a hospital-based physician and frankly, the prospect of caring for an Ebola patient is scary.” A nurse described herself as terrified. Meanwhile, the increasingly familiar hazmat-suited crew arrived to clean the nurse’s apartment, with a biohazard barrel out front.
Early in the AIDS epidemic, this kind of anxiety quickly morphed into panic: HIV-infected kids such as Ryan White were banned from schools; employees were fired simply because they were suspected of having AIDS; police officers in Washington raided a gay bar wearing gloves, face masks and bulletproof vests to protect themselves from what was described then as a “lethal threat.”
Underscoring these latest concerns, the term “Fearbola ” has quickly made its way into the lexicon, largely because of late-night host Seth Meyers’s segment on “the irrational fear of catching Ebola.” A fake doctor in the bit explained: “It is very easy to contract. . . . Just five minutes of exposure to CNN or Fox News, and you might have Fearbola.”
About the only thing that happened this past week that didn’t mirror the AIDS panic was that the phrase “Ebola fear” became a trending topic on Twitter — and that’s no doubt only because the social network was unimaginable in 1983.
I’m not the only one to draw this parallel. At a recent World Bank meeting, the CDC’s Frieden said that the last time he witnessed anything like the Ebola outbreak was during the early years of the HIV/AIDS crisis, cautioning: “We have to work now so this is not the world’s next AIDS.”
HIV/AIDS and Ebola have certain broad similarities: Both emerged in Africa, both are caused by viruses, and both, at least at their onset, have extremely high mortality rates. But there are significant differences. AIDS has a long latency period, meaning that those infected with HIV can go years without symptoms (although still transmit it). When it first emerged, no known tests could diagnose the virus; in fact, the virus was not named HIV until 1986. And it wasn’t until 1995 that the AIDS cocktail, the life-prolonging drug treatment, became widely available.
Ebola symptoms, by contrast, typically appear within 21 days; there is an antibody test, and generally effective treatments exist. Patients must be exhibiting symptoms, such as vomiting or diarrhea, to spread the disease. Most notably, those infected with Ebola are dying gruesome, fast deaths. AIDS fear was predicated on the unknown; fear of Ebola is largely based on what we do know.
“AIDS phobia,” a term used to describe discrimination against those with HIV, ravaged the United States because of a dearth of political leadership, misleading if not inaccurate information from public health officials, and a news media that stoked anxiety in its quest for ratings and headlines. Together, these became almost as dangerous to public health and civil rights as the virus itself.
How did this happen? President Ronald Reagan’s record is forever tarnished by his lack of leadership on HIV/AIDS; he infamously refused to address it until 1987. By that time, the CDC reported that more than 40,000 Americans had contracted the disease and more than 23,000 of them had died. When the president did speak about AIDS prevention, he recused the government and alarmingly mingled science with ethics: “The federal role must be to give educators accurate information about the disease. How that information is used must be up to schools and parents, not government. But let’s be honest with ourselves — AIDS information cannot be what some call ‘value neutral.’ After all, when it comes to preventing AIDS, don’t medicine and morality teach the same lessons?”
To his credit, Obama is displaying none of Reagan’s head-in-the-sand syndrome. As soon as it became clear that a second Dallas nurse had been infected with Ebola, Obama canceled campaign swings and hosted a high-level meeting at the White House to discuss the outbreak. On Friday, the president went a step further, tapping Ron Klain as his Ebola czar.
Even those who presumably knew better, such as the nation’s leading public health officials, dropped the ball on HIV/AIDS. Margaret Heckler, the secretary of health and human services, wrongly declared in 1984 that a vaccine would be available in as little as two years, providing a false sense of hope and undermining public trust in her and in HHS. Anthony Fauci, now the head of the National Institute of Allergy and Infectious Diseases, added to the alarm when he wrote in a 1983 editorial in the Journal of the American Medical Association that it was possible that “routine close contact, as within a family household, can spread the disease,” meaning that virtually everybody in spitting distance of a person infected with HIV was at risk. (The damage done, he later retracted the statement.)
To date, Frieden has been the government’s face when it comes to Ebola. He’s certainly doing better than Heckler but by his own admission is still falling short. He’s acknowledged the CDC’s lackluster response in treating Thomas Eric Duncan at a Dallas hospital and backtracked on his statements about how to contain Ebola. It’s one thing to exude certainty when certainty exists; but to do so in the face of so many unknowns can only take him down a familiar and flawed road.
When AIDS first appeared, the media barely paid attention. As Randy Shilts reported in his book, “And the Band Played On,” at first mainstream news organizations avoided covering the emerging health crisis because it only seemed to affect gay men and injection drug users. Once the epidemic was deemed newsworthy — meaning heterosexuals were at risk — the media exercised almost no restraint, writing the most attention-grabbing headlines and stories. Among the most inflammatory from those years: People magazine’s “AIDS: Fatal, Incurable and Spreading”; and Life’s 1985 cover story “Now No One Is Safe From AIDS.”
A notable exception was Hank Plante, who won Emmy and Peabody awards for his coverage of the beginnings of the epidemic. Plante told me on the phone recently: “There were a lot of wrong stories back then. There were panic stories about mosquitoes. ‘Can we get AIDS from mosquitoes?’ If that were the case, we’d all be dead.”
How is the media doing this time around, I asked? “They are so afraid of saying words they consider offensive. ‘It is spread through bodily fluids.’ What does that mean? Is it sneezing, kissing? That’s not good enough, and it also leads to panic that doesn’t need to be there.”
For the record, those bodily fluids are urine, saliva, sweat, feces, vomit, breast milk and semen. According to the CDC, the virus is not spread through the air or by water — nor by mosquitoes — although infected bats may pose a risk of transmission.
With so much finger-pointing, it’s also important to examine our own responses. Even though Americans’ risk of contracting Ebola is “virtually zero,” according to Andrew Pekosz, a professor at Johns Hopkins University’s Bloomberg School of Public Health, we’re not immune to its side effects. Pekosz told me: “Because this is a highly lethal disease whose symptoms are rather gruesome . . . we end up waiting for weeks to see if someone is going to come down with this deadly disease. This allows time to build fear and anxiety and forget about things like how safe the vast majority of us really are.”
Of course, it would help if we put aside our self-absorption and miscalculation of risk. A caller to an NPR program recently worried about wiping down the handles of shopping carts; a woman in my yoga class fretted about using a studio-owned, shared mat. Even I, while working in The Washington Post’s offices at the desk of a health writer, now quarantined after reporting on Ebola in West Africa, found myself unnerved — even though he hadn’t returned to the office since his exposure. “Stop it!” I said to myself.
Stop we must, and instead focus on what needs to be done in West Africa to contain the outbreak. Or choose to do something that will matter when it comes to public health — like having your kids vaccinated for other viruses and diseases, or getting your own flu shot.
There is one link between these two health scares that gives me hope — the heroism and selflessness displayed by front-line health-care providers tending to patients in West Africa and now in the United States. Ron Stall, a behavioral epidemiologist and HIV expert at the University of Pittsburgh who has been at the forefront of AIDS-prevention efforts since the early 1980s, told me: “I’m surprised that there hasn’t been a greater focus and celebration of the amazing courage displayed by those who are seeking to treat the ill, interrupt transmission and save lives of people that they had never even previously met.”