Tensions Around Contact Tracing During the AIDS Era Are Resurfacing With COVID-19

John Potterat was a contact tracer for 40 years, working through epidemics of syphilis, gonorrhea and HIV. Here, he is seated at his desk in Colorado Spring, 1974.  (Courtesy of John Potterat)

In 1968, John Potterat finished his tour of duty in Vietnam and came home to Los Angeles. He started working for the Centers for Disease Control and Prevention (CDC) on its syphilis eradication campaign in what became a 40-year career as a contact tracer.

"In a given day, I would be in the clinic for two, three hours. I would interview one or two people, and then I would go out in the field and drive around and locate the people that had been named," he said.

Tracking down sexual contacts in the "free love" era required private eye skills. A lot of people infected with a sexually transmitted disease didn’t know the names of the people they slept with. Maybe they remember a lover who works in a deli, but they don’t remember the name of the deli either. They only remember that it’s on South Broadway, and it’s the only deli in the neighborhood that doesn’t serve breakfast.

So Potterat drives up and down Broadway until he finds it. Then he writes a note for the employee — without a name, he addresses it with defining features, for example, the guy with a thick brown mustache and scorpion tattoo on his bicep.

"A day later, the person calls," Potterat said. "He was located, and he was tested. Turned out that he was positive."

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In the '70s, when gonorrhea took center stage, Potterat moved on to a new contact tracing job in Colorado. He sat at his desk in his paisley shirt, clashing paisley tie and Nigel Tufnel shag haircut, working the phones. Then at night, he tracked people down at the biker bars and gay bars.

"We would spend time there — it’s sort of a see and be seen type of approach, and we gained their trust through the '70s," he says. "But everything changed with AIDS."

A new virus with no name arrived in the '80s. And, unlike syphilis or gonorrhea, it wouldn’t go away with a round of antibiotics. There was no test for AIDS, there was no treatment and it was 100% fatal. Health departments felt helpless, Potterat said.

Contact tracers were in a moral quandary. Many felt it was unethical to tell someone they might have been exposed.

"What did we have to offer these people? We didn’t even have hope," Potterat remembered. "And these were young people. How do you tell a 23-year-old you might have two years to live? And here I am working for a medical clinic, and there’s not a damn thing I can do about it."

A couple of years later, Potterat concluded that was a mistake. They could have at least met with people to educate them about the virus and counsel them on how to stop spreading it further. Eventually, Potterat’s team traced HIV infections back to the origin of the epidemic in Colorado Springs.

"I think that, had we had the courage and the conviction to go visit these people, we could have saved several people, a dozen, 20," he said "So on some level, I failed. I made up for it later, but failure is failure."

Graphic of the HIV network derived from contact tracing in Colorado in the late 1980s through the 1990s. (From study: Risk network structure in the early epidemic phase of HIV transmission in Colorado Springs)

The Gay Community Resists

The gay community in San Francisco did not share Potterat’s enthusiasm for contact tracing.

Even when a test was developed in the mid '80s, and even when the first antiretrovirals came out, gay advocates in San Francisco were opposed to contact tracing. They were afraid of what would happen if local governments collected a list of gay men that could then be used against them.

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"If we create public health measures, which are doomed to scare people into avoiding public health departments, nobody gains, and the epidemic spreads," said gay rights lawyer, Ben Schatz, during a 1987 televised debate on KQED.

He warned what would come from naming names: lost jobs and lost housing. He and other advocates said public education was the way to go.

"People have to be able to protect themselves," he said. "If they think that the state is going to swoop in and say your sexual partner has AIDS, then they’re just going to continue burying their heads in the sand."

Some epidemiologists thought the money needed for contact tracing would be better spent on other things.

"A lot of my thinking about contact tracing back in those days was, 'well, what exactly is it supposed to add?' We’ve already told every single gay man they're at high-risk, and they should get tested," said UCSF doctor George Rutherford, who led the CDC’s AIDS response in San Francisco at the time. "At the time, the answer was, 'Nothing,'"

In smaller places, like Colorado where Potterat worked, they could contact trace and map disease networks. But in San Francisco, where a third of the population was infected, Rutherford says, it wasn’t cost-effective.

"Now, with much better drugs, it's become part of a standard operating procedure for any AIDS control program," he said.

A new generation of tracers

Veterans like Rutherford are relying on lessons learned in the '80s AIDS era to build the state’s new corps of the coronavirus contact tracers. Gov. Gavin Newsom has made contact tracing one of his key pillars for combatting the pandemic, and he’s tapped experts at UCSF to help train 20,000 new contact tracers.

Lisa Fagundes is one of 20,000 new contact tracers trained to help contain the coronavirus. (Jasmin Serim)

One of them is Lisa Fagundes, a librarian at the San Francisco Public Library, who began training in March when she was furloughed from her job on the first floor of the main library. She’s since been promoted to be a team lead, guiding other contact tracers as they place calls to people who have been exposed to someone who tested positive for COVID-19.

"We had a lot of contacts today, like 20 pages of contacts," she said after a recent shift. "It’s just getting crazy busy."

While people were generally receptive to their calls in the early months of the pandemic, privacy concerns have been mounting just as they did with HIV.

"We’re starting to encounter more of the segment of the population that doesn’t trust this whole system, that doesn’t trust the department of public health in general," Fagundes said.

Today, it’s Latino immigrant communities and communities of color who are disproportionately impacted by COVID-19 — they are more likely to contract the virus and more likely to die from it.

But the mistrust and fears of discrimination are the same as they were for the gay community in the '80s: lost jobs, lost housing, and now, getting deported.

"Here, because a lot of people may or may not be documented," Rutherford said. "People are hesitant, much like gay men were hesitant to get on a list of gay men."

It makes the work very difficult, Fagundes said, “because they’re a lot more curt and resistant, or suspicious or scared and upset.”

Overcoming Mistrust

Local state and county public health departments are leaning on lessons learned in the '80s to overcome the mistrust. They are running social media campaigns to demystify contact tracing and remind people the U.S. has been doing this for decades to contain all sorts of outbreaks, like STDs, measles, tuberculosis and food poisoning. They are building bridges with the affected populations by partnering with community groups that already have trusted relationships with them. And they are emphasizing hiring contact tracers who are bilingual and bicultural to ease communication.

But to truly win the public’s buy-in for contact tracing, veterans say the local health departments need back up from the federal government — they need a leader with a unifying message: us against the virus.

The president today, just like the president in the '80s, is doing the opposite.

"COVID or HIV, pretending that it wasn't there, or that it would go away," Potterat said. "And if it doesn't go away, 'Well, it's not affecting people that are really, really very important.'"

In the 1980s, President Ronald Reagan refused to reference AIDS in public for the first several years of the epidemic, alienating the gay community that was most impacted by the disease.

President Donald Trump refuses to wear a mask in public, repeatedly contradicts his top scientific advisors and routinely makes remarks that alienate the communities of color most impacted by the coronavirus.

"We paid the price then for a president who wouldn't utter the word," said David Harvey, executive director of the National Coalition of STD Directors, referring to the illness and deaths that could have been prevented. "This is where we have history repeating itself."

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Without a sustained national education campaign, without a unified national message and without leaders who model the behavior that curbs transmission of the virus, he said, the pandemic will spread, and more people will die.