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ACT UP Is Still Fighting 33 Years Later — Now It's Coronavirus

COVID

ACT UP is slamming the Food and Drug Administration for granting Gilead Sciences a seven-year market exclusivity of remdesivir — an antiviral drug that has shown promise in the treatment of COVID-19, also known as the novel coronavirus.

“Trump’s FDA just handed over a 7-year monopoly for Gilead Sciences drug, remdesivir—a promising treatment for COVID-19 while $79 million of the funding came from U.S. taxpayer dollars,” the ACT UP NY account posted to Twitter. “This is how pharma greed kills.”

The federal agency made the decision at a time when demand for the drug is skyrocketing. In recent weeks, some COVID-19 patients have responded favorably to the drug, leading to the beginning of clinical trials in its effectiveness against the deadly strain of coronavirus that is now classified as a pandemic by the World Health Organization.

Although remdesivir was originally developed by Gilead to combat Ebola during the West African outbreak from 2013 to 2016 — with the help of at least $79 million in taxpayer dollars — President Trump authorized “compassionate use” for COVID-19 treatment on Friday. On Monday, the same day the FDA designated remdesivir with “orphan” status, Gilead suspended this emergency access due to “overwhelming demand” as more and more patients have been hospitalized and need treatment, reports CBS News.

Watchdogs have criticized the FDA for giving remdesivir “orphan” status, a designation reserved for rare diseases that impact less than 200,000 people in the United States. A loophole in the 1983 Orphan Drug Act allows for drugs to be given the classification if a growing disease, like COVID-19, has not yet reached this threshold. At present, more than 40,000 people in the U.S. have tested positive for the novel coronavirus.

“The Orphan Drug Act is for a rare disease, and this is about as an extreme opposite of a rare disease you can possibly dream up,” James Love, director of the pharma watchdog Knowledge Ecology International, told The Intercept. Love added that “it’s absurd that this would happen in the middle of an epidemic when everything is in short supply.”

If remdesivir proves to be effective, its orphan status would mean a windfall of profits for Gilead, which would also be able to receive significant grants and tax credits for expenses related to clinical testing. The company has also been repeatedly accused of price gouging in multiple instances, setting drugs amounts that make them inaccessible to some who need them. Gilead’s monopoly may also limit availability and affordability in a time when states like California are predicting that more than half of their populations will be infected with COVID-19.

The news comes on the 33rd anniversary of the first action organized by ACT UP, the group founded to draw attention to the AIDS crisis in a time of widespread indifference. On March 24, 1987, around 250 protestors gathered at the intersection of Wall Street and Broadway in New York City, holding signs and laying down in the street in order to demand government and corporate action. Infamously, President Reagan refused to even mention the name of the plague that was disproportionately impacting the LGBTQ+ community.

Then, activists singled out the FDA and the pharmaceutical company Burroughs Wellcome, which at the time held the patent of the only approved, highly-priced AIDS drug, AZT. “Release those drugs,” was one of the chants. 

Channeling ACT UP’s history of activism, Jennifer Johnson Avril, director of advocacy communications at Housing Works and a former ACT UP member, came up with a new slogan. “If I die of COVID-19 — forget burial, drop my body on the steps of Mar-A-Lago,” she wrote in a Monday tweet

The phrase was inspired by a now-infamous jacket worn by activist David Wojnarowicz reading, “If I die of AIDS — forget burial, just drop my body on the steps of the F.D.A.” In short order, Housing Works and ACT UP worked together to mock up a graphic designed by Blaine Metzgar. In the graphic, the groups overlaid the new slogan on a medical mask.

“Yesterday, a friend posted that people he knew were losing people to COVID-19 and the government had blood on its hands. I immediately thought of David Wojnarowicz's jacket and posted the line,” Avril told Out in a statement. “The federal government has already killed some of us, we just haven't seen the body count yet. I'm angry, we're angry, and we've just begun to fight.” She went on to say that the usage of Mar-a-Lago specifically as opposed to a government building was purposeful.

“It symbolizes all of this administration's corruption and sick values,” she said. “And it connects more strongly to Trump and his administration.” At present, the slogan only exists as a social media graphic.

RELATED | White House Rep: COVID-19 Response Must Be Modeled After HIV Activism

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