AIDS activists feel sense of déjà vu as they watch the coronavirus policy battle unfold
The federal government’s response to the novel coronavirus feels all too familiar to Tom Sheridan.
Thirty years ago, as the national director of public policy for the powerful AIDS Action Council, he helped to force the Reagan Administration to acknowledge the existence of that disease. The first case of AIDS emerged in the U.S. in 1980, but it wasn’t until 1985 — nearly 13,000 deaths later — that President Reagan uttered its name publicly. Before, he dismissed it as the “gay plague.”
For the record:
10:21 a.m. June 28, 2020An earlier version of this article misspelled Joseph Osmundson’s last name in two instances. It also failed to note the participation of the Latino Commission on AIDS and the Black Leadership Commission in the COVID-19 Working Group.
Now, amid another global health crisis, Sheridan said he is witnessing an eerie repeat of events: the current administration blatantly ignoring early warning signs, the president dismissing the disease as the “Chinese plague” and death rates soaring, with no end in sight.
“What I feared the most is what I’m seeing now,” said Sheridan, who runs an advocacy strategy firm that helps to mobilize and organize not-for-profit activist groups. “We didn’t learn the lessons we should have learned.”
Between 1988 and 1993, Sheridan’s advocacy for AIDS proved victorious. In 1990, he was a key architect of the bill that would become the Ryan White Comprehensive AIDS Resources Emergency Act, which helped to secure access to healthcare for low-income and uninsured AIDS patients. Then he successfully lobbied for the Americans with Disabilities Act, making it illegal to discriminate against those with HIV or AIDS. And in 1991, his coalition’s efforts effectively doubled the budget for AIDS research at the National Institutes of Health.
Now, he fears, the fight against COVID-19 will be an equally rigorous battle. But with a virus that is so much more easily transmitted, the damage will be worse.
“AIDS was a slow burn,” he said. “Coronavirus is like a wildfire.”
Sheridan is among a coalition of activists, frontline workers and public health professionals from the AIDS era who are disturbed to see this recent history repeat itself with COVID-19. As vestiges of AIDS and HIV mismanagement resurface in current times, those on the front lines draw chilling similarities between the neglect, denial and misinformation of the Reagan administration and President Trump’s handling of COVID-19, pointing to gaping holes in the U.S. public health system and a harrowing reckoning: Americans are still ill-equipped to weather such a crisis.
“We are now seeing the results of the past 30 years of the destruction of our public health system,” Sheridan said.
Gleaning lessons and experiences from the AIDS era, epidemiologists and scientists — including Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Disease, who played a key role in pushing science-based research and policy reform for AIDS — now understand how to respond when a highly contagious viral pandemic hits: test, treat, trace and isolate, according to Dr. Tom Frieden, former director of the Centers for Disease Control and Prevention.
“In a public health crisis, it’s essential that leaders act quickly, speak plainly and honestly and be guided by science and public health,” Frieden said.
But with the lack of a centralized public health response, such protocols can’t be carried out.
Joseph Osmundson, a microbiologist and writer who works with the Treatment Action Group, an AIDS policy and research think tank, says the scientists with whom he works have been clear on a public health plan to contain the coronavirus since it began to ravage the country. But without a cohesive public healthcare system, there is no uniform public policy to support such a plan.
“That is why everything is falling between the cracks,” Osmundson said.
And now, like in the 1980s and ’90s, advocacy groups are scrambling to fill in where public health policy falls short.
“The COVID advocacy community is really built upon what we’ve learned from HIV,” he said.
In March, the Treatment Action Group partnered with the Latino Commission on AIDS and the Black Leadership Commission to launch the COVID-19 Working Group, which includes Osmundson and major players from the AIDS era.
And they, like Sheridan, are distressed.
“Watching PTSD be triggered in those people who lived through the ’80s and ’90s in New York in real time — by some echoes of bureaucratic murder, basically — has been intensely harrowing,” Osmundson said.
In a disturbingly similar fashion to AIDS-era mismanagement 35 years ago, the federal government has been criticized for a laggard response to COVID-19, a failing that was corroborated in Thursday’s Government Accountability Office report, which laid out shortcomings that included a lack of testing and of ensuring that hospitals had adequate supplies. In late January, President Trump failed to heed warnings from public health officials of a potential international health emergency. In February, he assured attendees of his rallies that the virus would vanish when the weather warmed up. And in March, he rejected the type of aggressive testing regime called for by the World Health Organization. A Yale University epidemiologist went so far as to call this pattern not simply negligent but deliberate.
Tracking and tracing
One sign of the broken public health system is the failure to carry out widespread contact tracing, a key pillar in quelling the spread of the virus as the country reopens.
The practice involves identifying and interviewing anyone who comes into close contact with a confirmed case of COVID-19. It has been credited with reining in the virus in Germany and South Korea, but it has never been fully carried out in the United States.
But for contact tracing to work, public health officials say, a system of social services must be set up, including quarantine plans, policies to protect vulnerable communities and delivery services for essential goods. With COVID-19, as with AIDS, such services have been sorely lacking.
“There’s got to be a system in place to expeditiously get the right information,” said Michael Cousineau, doctor of public health and professor of clinical preventive medicine at the University of Southern California. “Where are people going to quarantine? What are they going to do?”
To encourage tracing and tracking participation in New York, where the two hardest-hit communities are Black and Latino, Osmundson and his team at the Treatment Action Group work with social workers to engage the community.
But without policies in place to protect undocumented citizens and other groups that have historically suffered human rights abuses, engaging with testing and tracing is a calculated risk for many. Weighing this, Osmundson said, many social workers have advised undocumented clients in the Latino community not to participate in tracking and tracing, fearing issues with Immigration and Customs Enforcement.
“The Treatment Action Group still hasn’t gotten assurance that test and trace data cannot be shared with law enforcement and ICE,” Osmundson said. “How do you test and trace in the Latinx community without a binding legal promise that their information can’t be handed over to ICE?”
On June 1, New York City launched its contact tracing system, the Test and Trace Corps, in partnership with the city Department of Health. Jackie Bray, the program’s deputy director, said her team is focused on building out and implementing social services to pair with the tracing project. They provide meal delivery, training for patients on applying for paid sick leave from work and mental health counseling.
To establish trust in vulnerable communities and ensure a level of cultural competence among staff, more than half of the frontline workers were hired from the neighborhoods they now serve. Additionally, Bray said, the project has made policy decisions that are a direct response to community fears, such as not collecting Social Security numbers or even recording information such as country of origin.
“This is about a public health response,” Bray said. “Not law enforcement.”
But Sheridan, who is also a social worker, urges that in a bureaucratic system, such services cannot be trusted without federal support.
“Immigration laws are federal,” he said. “Without federal laws that protect citizens, I wouldn’t recommend someone I love who is vulnerable to participate in testing and tracing at this point.”
Tracking and tracing was also undermined, for similar reasons, in the early days of AIDS. With the social stigma associated with a positive test, and no guarantees of confidentiality, the public was discouraged from complying.
“To know you were positive was actually to get worse treatment, not better,” Sheridan said. Before the Americans with Disabilities Act passed in 1990, thanks in large part to Sheridan’s advocacy, there was no policy in place to protect AIDS sufferers from medical discrimination.
“If you tested positive, you would lose your job, lose your home, lose your insurance,” he said. “There was no incentive for people to participate in tracing and testing.”
As far as current mismanagement with contact tracing efforts in New York and nationwide, Cousineau can only hope for reform in the future.
“What we can learn from this — and I hope we do — is a better understanding of what public health truly means,” Cousineau said.
COVID-19 has allowed Sheridan and other AIDS activists to reflect upon their own failures from the past, too. After his years lobbying for AIDS-related public health reforms, Sheridan said, his coalition never took action to hold leadership accountable for the mistakes they made.
“We never went back to retaliate, per se,” he remembered. “We didn’t think that would be helpful.”
Sheridan recalls how, when South Africa’s apartheid system collapsed, thousands of victims were invited to give statements about their mistreatment in public hearings as part of the Truth and Reconciliation Commission in 1996. This culminated in the creation of the Institute for Justice and Reconciliation, which has been credited as a crucial step toward establishing a full and free democracy in South Africa.
Sheridan wonders if a form of restorative justice following the AIDS epidemic mismanagement — that is, holding the Reagan administration accountable — would have helped to prevent the current crisis.
“Maybe the consequence of not doing those things will be to repeat that horrible history again,” he said.
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