Molly Cooke and Paul Volberding
Source: Molly Cooke and Paul Volberding
Dr. Paul Volberding and Dr. Molly Cooke were among the hundreds of medical professionals who found themselves unexpectedly on the frontlines of the HIV epidemic back in the 1980s. As young doctors in San Francisco, the couple treated some of the first patients with a mysterious — and highly deadly — virus.
Now, they’re sheltering in place in San Francisco, in the midst of another major disease outbreak.
It’s bringing back a flood of memories.
Covid-19 is a very different kind of virus than HIV, which progresses into AIDS. It is far less transmissible than Covid-19, far slower to develop, and also far more deadly at its height. But the lessons learned from the epidemic have stayed with many of San Francisco’s longtime residents, including its doctors.
Back in the 1980s, the city consistently had the highest per capita rate of HIV cases. Because of that, residents say, it created a line of communication between public health, doctors and the broader community that has never been broken.
“Going through this pandemic brings up visceral, emotional memories of HIV,” said Barbara Welles Seegal, a longtime San Francisco resident in her sixties. “Many of us lost loved ones and I lost a number of good friends. It never really goes away.”
For Welles Seegal, the HIV epidemic became personal when a close friend contracted the virus in the early eighties. He died at the age of 30 in 1986, and his partner died a year later. At her friend’s memorial service, she talked about bringing his community of friends together the following year. “A few of them looked at me,” she recalled. “And they asked, will there be a next year for us?”
Welles Seegal and many of her fellow residents watched as the city’s doctors worked tirelessly to try to help these patients, knowing that they couldn’t do much.
The city eventually became internationally recognized for its efforts. Once the epidemic’s ground zero, today it has just a few hundred new cases ever year thanks to the creativity of the local health department.
Among other breakthroughs, San Francisco pioneered the idea that HIV patients should start antiretroviral drugs as soon as they test positive, rather than waiting for the immune system to be impacted.
“I love the San Francisco model,” Dr. Anthony S. Fauci, the director of the National Institute of Allergy and Infectious Diseases, told the New York Times back in 2015. “If it keeps doing what it is doing, I have a strong feeling that they will be successful at ending the epidemic as we know it.
Welles Seegal is well aware of that history, which remains a source of pride. “We have this legacy as a city,” she told me. “And it left us with this tremendous respect for our health department.”
Not overwhelmed — at least not yet
In 2020, as the country battles the coronavirus, San Francisco is faring better than many other American cities. New York now has approximately 10 times more Covid-19 cases than the entire state of California, even though the two cities were neck and neck in early March.
Manhattan is larger and denser, but another factor, some public health experts say, is that San Francisco’s policymakers issued very early shelter-in-place orders compared to the rest of the country. And its residents mostly seem to be sticking with them.
A man walks his dog past a homeless man sleeping under a message painted on a boarded up shop in San Francisco, California on April 1, 2020, during the novel coronavirus outbreak.
Josh Edelson | AFP | Getty Images
Now, as other parts of the country rush to reopen, San Francisco is slowly and carefully easing out of the restrictions, guided by the advice of public health experts and epidemiologists. Polls show that citizens largely support the policies: Only 11 percent of the city’s residents see an urgent need to end shelter-in-place.
There are still new Covid-19 cases everyday in San Francisco, but the numbers are not yet overwhelming hospitals.
It’s a fact that has not been lost on the generation of doctors that treated HIV patients, including Dr. Volberding, who is now the director of the AIDS Research Institute.
“Many of San Francisco’s doctors were jumping into help with HIV,” he said. “And now, we are getting a good reputation for being promptly responsive when it comes to this current crisis.”
Taking privacy seriously
Another big lesson from the HIV epidemic involved how public health incorporated the perspectives of civil liberties and privacy rights groups.
In the U.S., AIDS primarily affected marginalized groups, particularly gay men and intravenous drug users. So it was vitally important that medical professionals preserved anonymity wherever possible.
That thinking resulted in “HIV exceptionalism,” a term that academics like Mailman School of Public Health at Columbia University’s Ronald Bayer have used to describe the notion that good privacy policy and good public health policy were one in the same during the HIV epidemic.
“In those early years of the HIV epidemic, before there was a highly effective treatment, there was a great fear the surveillance would be counterproductive,” said Professor Bayer. “There was a concern that if people felt they might be reported by name to public health, they might be reluctant to go to a doctor and get tested.”
An image of the HIV virus taken with transmission electron microscopy.
BSIP/UIG | Getty Images
Many of the doctors treating HIV patients recall that they took steps to preserve patient privacy. Dr. Cooke and Dr. Volberding recall that San Francisco developed a whole system around anonymized testing, which was a breakthrough given that some patients were reluctant to seek medical care – fearing that they would be outed in the process. “Those of us in the epidemic were really sensitive about that,” said Dr. Cooke. “It was almost to a fault. Looking back, we could have worked with public health more.”
“We were really conscious of confidentiality, really for the first time I can recall in my medical career,” recalls Dr. David Brown, a professor of medicine at Washington University in St. Louis, who treated HIV patients in San Francisco in the eighties. “In reporting test results before that, we would leave a message on a voicemail. But we learned to take privacy much more seriously during HIV.”
All of those issues — which have emerged once again during the Covid-19 crisis — forced public health and civil liberties groups to work together and find a mutually satisfactory solutions. For the city of San Francisco, which famously champions civil liberties, doctors and public health departments learned how to balance the two sides.
“I’m not aware of a single case where a patient’s name reported to the CDC was used in any malicious way,” said Dr. Volberding. “They did a good job.”
‘The scarring that we still have’
Dr. Bob Wachter, who is now the chairman of the department of medicine at UC San Francisco, started treating HIV patients in 1983 when he arrived to the city to start his internal medicine residency. He’s written extensively how that impacted him personally, and how it transformed medical training more broadly.
Almost thirty years later, he is now working through the strategy for UCSF’s response to Covid-19. He recognizes that the city’s health systems not yet been inundated with cases just yet. In his view, that’s in large part because the city’s legislators were willing to listen to the scientific experts who warned them about Covid-19 early on.
“I think it partly was the scarring that people here still have about what a viral illness can still do to a community,” he said. “The lifeblood of the Bay Area, which we applied way back in the eighties and nineties, is to take data and use it to make thoughtful decisions.”
It’s an experience that has not been forgotten in the medical community, even to this day.
“The entire city knows what it looks like if a virus takes off — and I suspect that gave some courage to our political leader,” said Dr. Wachter. This was no theoretical risk.”
