AIDS activists feel déjà-vu in the middle of a political battle over the coronavirus

The federal government’s response to the new coronavirus is too familiar to Tom Sheridan.

Thirty years ago, as the national director of public policy for the powerful AIDS Action Council, he helped compel the Reagan Administration to acknowledge the existence of that disease. The first AIDS case emerged in the United States in 1980, but it was not until 1985, nearly 13,000 deaths later, that President Reagan publicly pronounced his name. Before, I dismissed it as the “gay plague”.

10:21 am, June 28, 2020An earlier version of this article misspelled Joseph Osmundson’s last name in two cases. He also did not notice the participation of the Latino Commission on AIDS and the Black Leadership Commission in the COVID-19 Working Group.

Now, in the midst of yet another global health crisis, Sheridan said he is witnessing a mysterious repeat of events: the current administration blatantly ignores the first warning signs, the president dismisses the disease as the “Chinese plague” and death rates. soar, with no end in sight.

“What I was most afraid of is what I’m seeing now,” said Sheridan, who runs a defense strategy firm that helps mobilize and organize nonprofit activist groups. “We did not learn the lessons we should have learned.”

Between 1988 and 1993, Sheridan’s defense of AIDS was victorious. In 1990, he was a key architect of the bill that would become Ryan White’s Comprehensive AIDS Resource Emergency Act, which helped ensure access to healthcare for low-income, uninsured AIDS patients. He then successfully lobbied for the Americans with Disabilities Act, making it illegal to discriminate against people with HIV or AIDS. And in 1991, your 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 spreads much more easily, the damage will be worse.

“AIDS was a slow burn,” he said. “The coronavirus is like a forest fire.”

Sheridan is among a coalition of AIDS-era activists, front-line workers, and public health professionals who are disturbed to see this recent story echoed with COVID-19. As the vestiges of AIDS and HIV mismanagement re-emerge in modern times, those on the front line bring chilling similarities between the Reagan administration’s neglect, denial, and disinformation and President Trump’s handling of COVID-19, pointing to loopholes in the U.S. public health system and a heartbreaking estimate: Americans are still poorly equipped to weather such a crisis.

“We are now looking at the results of the last 30 years of the destruction of our public health system,” said Sheridan.

Learning lessons and experiences from the AIDS era, epidemiologists and scientists, including Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, who played a key role in driving science-based research and policy reform to AIDS, they now understand how to respond when a highly contagious viral pandemic occurs: testing, treating, tracking, and isolating, according to Dr. Tom Frieden, former director of the Centers for Disease Control and Prevention.

“In a public health crisis, it is essential that leaders act quickly, speak clearly and honestly, and be guided by science and public health,” Frieden said.

But with the lack of a centralized public health response, such protocols cannot be carried out.

Joseph Osmundson, a microbiologist and writer working with the Treatment Action Group, a group of experts in AIDS research and policy, says the scientists he works with have been clear on a public health plan to contain the coronavirus since that began to devastate the country. But without a cohesive public health system, there is no uniform public policy to support such a plan.

“That is why everything is falling through the cracks,” Osmundson said.

And now, as in the 1980s and 1990s, advocacy groups are struggling to complete public health policy.

“The COVID advocacy community is really based on what we have 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 Task Force, which includes Osmundson and leading actors in the AIDS era.

And they, like Sheridan, are distraught.

“See how post-traumatic stress disorder is triggered in those people who lived in the 1980s and 1990s in New York in real time, by some bureaucratic echoes The murder has basically been intensely heartbreaking, ”Osmundson said.

In an eerily similar way to mismanagement in the AIDS era 35 years ago, the federal government has come under fire for a lagged response to COVID-19, a flaw that was corroborated in the Office of Government Accountability report Thursday, He highlighted deficiencies that included lack of testing and ensuring that hospitals have adequate supplies. At the end of January, President Trump ignored the warnings of public health officials from a possible international health emergency. In February, he assured attendees of his protests that the virus would disappear when the weather warmed up. And in March, it rejected the type of aggressive testing regimen requested by the World Health Organization. A Yale University epidemiologist went as far as to Call this pattern not simply negligent but deliberate.

Tracking and following

One sign of the failure of the public health system is the inability to carry out widespread contact tracing, a key pillar to stifle the spread of the virus as the country reopens.

Practice involves identifying and interviewing anyone who comes into close contact with a confirmed case of COVID-19. It is credited with controlling the virus in Germany and South Korea, but it has never been fully carried out in the United States.

But for contact tracking to work, public health officials must establish a social service system, including quarantine plans, policies to protect vulnerable communities, and essential goods delivery services. With COVID-19, as with AIDS, such services have been very scarce.

“There must be a system to quickly get the right information,” said Michael Cousineau, a doctor of public health and professor of preventive clinical medicine at the University of Southern California. “Where will people go to quarantine? What are they going to do? “

To encourage follow-up and follow-up of participation in New York, where the two most affected communities are Black and Latino, Osmundson and his team in the Treatment Action Group work with social workers to engage the community.

But without established policies to protect undocumented citizens and other groups that have historically suffered human rights abuses, getting involved with testing and tracing is a calculated risk for many. In weighing this, Osmundson said, many social workers have advised undocumented clients in the Latino community not to participate in tracking and tracing, fearing trouble with the Immigration and Customs Enforcement Service.

“The Treatment Action Group has not yet obtained a guarantee that test and trace data cannot be shared with law enforcement and ICE,” Osmundson said. “How is it evaluated and tracked in the Latinx community without a binding legal promise that your information cannot be released to ICE?”

On June 1, New York City launched its contact location system, Test and Trace Corps, in association with the city’s Department of Health. Jackie Bray, deputy director of the program, said her team is focused on building and implementing social services to match the tracking project. They provide meal delivery, training for patients on applying for paid occupational sick leave, 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 in 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 the country of origin.

“This is a public health response,” said Bray. “No law enforcement”.

But Sheridan, who is also a social worker, urges that such services cannot be trusted in a bureaucratic system without federal support.

“Immigration laws are federal,” he said. “Without federal laws protecting citizens, I would not recommend someone I love who is vulnerable to participate in testing and tracking at this time.”

Tracking and tracing were also undermined, for similar reasons, in the early days of AIDS. With the social stigma associated with a positive test and without guarantees of confidentiality, the public was discouraged to comply.

“Knowing it was positive was actually getting worse treatment, not better,” Sheridan said. Before the Americans with Disabilities Act was passed in 1990, thanks largely to Sheridan’s defense, there was no policy to protect AIDS sufferers from medical discrimination.

“If you had a positive result, you would lose your job, you would lose your home, you would lose your insurance,” he said. “There were no incentives for people to participate in the tracking and testing.”

As for current mismanagement with contact search efforts in New York and across the country, Cousineau can only hope for reform in the future.

“What we can learn from this, and I hope we will do, is a better understanding of what public health really means,” said Cousineau.

Looking back

COVID-19 has also allowed Sheridan and other AIDS activists to reflect on their own past failures. After her years pushing for AIDS-related public health reforms, Sheridan said, her coalition never took steps to hold leaders accountable for the mistakes they made.

“We never retaliated again, per se,” he recalled. “We didn’t think it would be useful.”

Sheridan recalls how, when the South African 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 towards establishing a full and free democracy in South Africa.

Sheridan wonders if a form of restorative justice after mismanagement of the AIDS epidemic – that is, holding the Reagan administration accountable – would have helped prevent the current crisis.

“Perhaps the consequence of not doing those things will be to repeat that horrible story again,” he said.

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