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HIV activists have a history of outrageous energy. COVID protesters hope to match it

Dr. KJ Seung, a professor at Harvard Medical School, speaks at a September rally outside the home of the CEO of Moderna, maker of one of the two mRNA vaccines that prevent COVID-19. The fake bones are meant to represent lives lost unnecessarily to the coronavirus. Seung was part of a group of doctors demanding Moderna share vaccines — and its recipe — with low-resource countries.
Dr. KJ Seung, a professor at Harvard Medical School, speaks at a September rally outside the home of the CEO of Moderna, maker of one of the two mRNA vaccines that prevent COVID-19. The fake bones are meant to represent lives lost unnecessarily to the coronavirus. Seung was part of a group of doctors demanding Moderna share vaccines — and its recipe — with low-resource countries.

They wore white coats and gave a press conference, standing next to a 12-foot-tall pile of fake bones. The 15 or so doctors and scientists from Harvard Medical School staged this protest in front of the Boston home of Moderna CEO Stephane Bancel. The bones, they said, symbolized unnecessary COVID deaths.

The U.S. biotech company is one of two in the world that have come up with an mRNA vaccine against COVID-19. Of the World Health Organization-approved vaccines, these mRNA vaccines show the highest efficacy rates against COVID.

For their Sept. 29 demonstration, the protesters had a simple demand: Share your vaccines — and your vaccine formula.

They're part of a small group of health workers and other activists who are calling for global vaccine equity – a goal that's a long way off in a world where well-to-do countries are hitting vaccination rates of 50% and up while just 3.1% of people in low-income countries have received at least one dose.

Protesters have also demonstrated at Johnson & Johnson's New Jersey headquarters, accusing the company of "pandemic profiteering" with its COVID vaccine. And they've stood outside the home of President Biden's chief of staff, calling on the U.S. government to spearhead a more ambitious global vaccine distribution program.

Some of the medical professionals in this fledgling movement are even refusing to take the COVID booster shot they are eligible for. Dr. Sriram Shamasunder, founder of Health Equity Action Leadership Initiative, is one of about 20 doctors who've declared they will defer their boosters until the end of the year, calling on all health-care workers who support vaccine equity to do the same. The group hopes that if the public sees that doctors constantly at risk of being exposed to COVID are willing to defer vaccines in the name of getting supplies to lower-income countries, then the issue of global vaccine equity must be critical.

"This feels like the defining moment of our lives and careers as health-care workers and doctors," says Shamasunder, "and so if you're not going to take a stand now, then when?"

(He was careful to note that their group believes in the efficacy of vaccines and that everyone involved is healthy, has no underlying conditions and has received both doses of an mRNA vaccine.)

Will these demonstrations by health-care activists work? Will they move the policy needle — and convince drug companies to open up their formula books?

To answer those questions, public health specialists look back at the HIV/AIDS protests of the '80s and '90s. There are strong parallels to the current vaccine activism — as well as crucial differences.

How AIDS protesters got the eye of the U.S. government — and the world

There were two kinds of demonstrations concerning AIDS medications: Calls for access to drugs that weren't yet available to the public, followed by demands that the drugs be available in all countries, not just wealthy ones.

Thirty-three years ago this month, on October 11, hundreds of activists, including health-care workers, joined forces in front of the Food and Drug Administration's headquarters in Rockville, Maryland, demanding that the government allow AIDS patients to be treated with potentially life-saving experimental drugs like AZT. The protestors, many of whom were HIV positive or diagnosed with AIDS, lay in the streets, blocking traffic with their bodies and holding signs that read "R.I.P. Killed by the FDA."

That got the government's attention. Several days later, the FDA met activists to hear their demands. Within months, the FDA took steps to allow more patients to try promising new therapies.

That was just the beginning of the protest movement. Once life-sustaining anti-retroviral meds were approved in the U.S. and available in high-income nations, demonstrators called for global equity. Like the COVID demonstrators today, they wanted people in lower resource countries to be able to get the same treatments available in the wealthy West.

Activist groups like the AIDS Coalition to Unleash Power — better known as ACT UP – developed a unique strategy to get their message across: a combination of high-profile mass protests and collaborations between doctors, researchers and activists. That partnership — the brainchild of Dr. Joseph Sonnabend, a South African physician and HIV/AIDS researcher — harnessed the expertise of medical experts and gave activists the scientific and medical information they needed to bolster their message. This strategy enabled "citizen scientist activists" to make a strong case for drug equity, not just to the public but directly to government bodies like the FDA and the National Institutes of Health.

The activists could draw on the expertise of their partners to ask key questions and contribute ideas about the testing of new medications and about equitable global distribution as HIV treatments were developed, says Dr. Wafaa El-Sadr, director of the Center for Infectious Disease Epidemiologic Research at Columbia University. She believes this strategy sped up the timeline of HIV treatment at the global scale.

ACT UP also built international coalitions with doctors and health-care workers in countries with high HIV-infection rates to provide support and show how dire the global need for HIV/AIDS medication was. El-Sadr, who was a health-care provider in that era working with HIV/AIDS patients, says that the activists could speak out with an urgency that doctors themselves would perhaps not have been able to express on their own.

Activists infiltrated the New York Stock Exchange and chained themselves to the VIP balcony. They marched on Wall Street and held a "die in" — like a sit-in protest, except people lay down as if they were dead — at St. Patrick's Cathedral in New York. They threw the ashes of loved ones who had died from AIDS on the White House lawn. Over time, hundreds were arrested for civil disobedience. And as their coalitions with international organizations and groups grew stronger, so did the pressure on the U.S. government to take action.

"It's hard for people today to appreciate the despair, the magnitude of the suffering, the magnitude of the losses," says El-Sadr, describing how the relentlessness of the epidemic drove people to activism. "They were no ordinary times, and they required action and doing things that had not been done before."

Demonstrators for AIDS research funds marched up New York's Madison Avenue on July 24, 1990, to protest President George Bush's policies on the disease.
/ Allan Tannenbaum/Getty Images
Demonstrators for AIDS research funds marched up New York's Madison Avenue on July 24, 1990, to protest President George Bush's policies on the disease.

In 2003, the Bush administration made the decision to globally distribute antiretroviral treatment (ART) funding and resources, especially to low-income countries with high HIV infection rates, through the President's Emergency Plan for AIDS Relief, or PEPFAR. This initiative provided support, medicine and funding to the global community and was the largest commitment by any nation in history to address a single disease prior to the COVID pandemic. Even so, more than a decade had passed since the antiretroviral AZT was approved by the FDA.

Despite the lag between the FDA approval of ART in 1995 and PEPFAR's global distribution campaign eight years later, David France, the author of a history of AIDS activism called How to Survive a Plague, as well as a 2012 documentary by the same name, believes there are clear connections between the activists' demands and the government's response, reflected in the changes to policy that were ultimately made, like which countries would be the focus for these treatments. "It certainly would have been considerably longer were it not for this really novel kind of protest movement," France says.

And 18 years later, the numbers attest to the success of this movement. HIV still kills hundreds of thousands of people (680,000 in 2020, reported by UNAIDS), but nowhere near the 2 million deaths annually at the height of the epidemic in the early 2000s.

Activism for COVID doesn't look quite the same

The fledgling movement for global vaccine equity is in fact drawing from the expertise of HIV activists. For example, PrEP4All, a nonprofit group that strives to increase access to HIV medicines, has expanded its scope to include COVID advocacy and helped plan the Moderna protest in Boston.

But it is health-care workers who are leading the charge — and that has both advantages and disadvantages, France says. When these medical workers speak out, they can provide well-informed context about COVID and solutions to bring about worldwide vaccination. On the other hand, he says, these doctors and other professionals aren't always able to express the "creative fury" that characterized the HIV movement.

Many of the HIV activists were young people willing to take a bold public stand and work full-time on activism. Unafraid to take radical approaches, they gained attention and built a following.

By contrast, the health workers of the 21st century "are not out there in large numbers and they're not out there with the same kind of fearless tenacity," says France. The difference isn't so much a lack of passion as it is the limits they face as members of the medical profession. "They have obligations, they are fully established and they are inside the response to the pandemic," he says. "That might be, I think, the problem with this more than anything else."

So while deferring a booster shot is a dramatic stance, says El-Sadr, she considers it to be more a gesture of solidarity than an action that will tip the scales. "It's appropriate and it's a part of this idea of empathy and healing," El-Sadr says, "but I don't believe it's the full solution. I don't think activists believe it is the full solution to the current problem. The whole solution is to produce many more vaccines."

Another challenge is that the protests are not part of a global collaboration at this time. It's mainly U.S.-based COVID activists and health-care workers speaking out on behalf of people in other countries. Much of the power of the HIV movement was that many of the protestors were personally diagnosed with HIV or were close to people who were — and they spoke out in different countries.

With COVID, many doctors and health-care workers have colleagues in countries with low vaccination rates and can see, intimately, the shape of this disparity. But even if they can highlight their colleagues' stories, their personal experience is much different.

Infectious disease doctor Joia Mukherjee, of Partners In Health and Harvard Medical School, spoke at the Moderna protest in Boston. She has friends and colleagues in Haiti, where 0.7% of their population is vaccinated. Mukherjee and other doctors described the helplessness and frustration that sets in while watching their peers and friends, with equal skill, do the same work but without the ability to protect themselves as they take care of others infected with COVID-19. Because her colleagues are in the throes of dealing with medical crises, without much aid, and have limited ability to take to the streets, Mukherjee feels it is her duty to be their advocate.

"My friend, Dr. Benoucheka Pierre, is the only intensive care unit doctor in the country of Haiti," Mukherjee says. "She was on call by herself for 15 months before she was vaccinated. She was vaccinated 8 months after I was vaccinated, and I don't see patients."

Shamasunder, the doctor who's deferring his booster, is optimistic. People are tuned into stories about COVID, he says. With so much media attention to COVID-related issues, even a little bit of action can go a long way in spreading the message of vaccine inequity, he believes. He sees the act of forgoing a booster as a powerful symbolic action. He wants to challenge his healthy medical peers to act, and – he hopes — compel the Biden administration to make changes in its global vaccine distribution policy.

"The lesson from the HIV movement is that the pharmaceutical companies were never voluntarily providing access to HIV meds," Shamasunder says. "It was a fight and it was a campaign to really publicly pressure them, and that's what's needed again.

France agrees. He doesn't think that the administration will be able to compel Moderna to share its formula without pressure and support from the general public. Activism, he says, is what changes the game — it just needs to grow faster and bigger, as soon as possible.

"I think for the streets to catch fire, which is what ACT UP accomplished [for the HIV epidemic], you need to show real fury," France says. "If activism doesn't join into this effort [to help this movement for global access] to win, we risk reversing all of the advances that have been made scientifically against the coronavirus. We go back to day one of the pandemic."

Maria Parazo Rose is a science journalist based in Boston, where she is a student at MIT's Graduate Program in Science Writing. She has served a producer on "Resettled," a podcast that explores the refugee resettlement process in the U.S. She has also reported for StoryCorps, The Allegheny Front and NPR stations in Pittsburgh, Pa., and Richmond, Va. Follow her on Twitter @mariaparazorose.


Copyright 2021 NPR. To see more, visit https://www.npr.org.

Four youths lay on the ground surrounded by crosses symbolizing victims of HIV-AIDS in a demonstration on November 26, 2001 in Cape Town, South Africa. The protest was aimed at the government's AIDS policies, including a failure to distribute antiretroviral drugs to pregnant mothers.
/ Per-Anders Pettersson/Getty Images
Four youths lay on the ground surrounded by crosses symbolizing victims of HIV-AIDS in a demonstration on November 26, 2001 in Cape Town, South Africa. The protest was aimed at the government's AIDS policies, including a failure to distribute antiretroviral drugs to pregnant mothers.