Activism and the Oscars
When The Oscars announces its Academy Award-winning films Sunday night, a Yale School of Public Health student will be paying closer attention than most.
Gregg Gonsalves, who at 49 years old is pursing his Ph.D., took a long hiatus from his education in the 1980s and 1990s, to address a public health issue that could not be ignored: HIV/AIDS.
A soft-spoken man with wire-rimmed glasses and closely cropped dark hair, Gonsalves soon became a prominent AIDS activist during the turbulent early years of the epidemic when large numbers of people were dying and no effective treatments were available.
His involvement with the activist group ACT-UP and subsequently with the Treatment Action Group (TAG) are part of a film, How to Survive a Plague, which is nominated for best documentary. He, and the rest of the world, will learn Sunday (February 24) which of five finalists is the winner.
While Gonsalves credits the film, released late last year and directed by David France, with telling an important chapter of the AIDS story from roughly the mid 1980s to the mid 1990s and accurately portraying how young people agitated and pushed for policy changes and drugs that worked effectively against the disease until, finally, they started to appear.
Still, Gonsalves says, portions of the film are unbearable for him. Portrayed in it are some of his young friends and colleagues from 25 years ago who were among those claimed by the disease.
“I find it really hard to watch,” he says. “In the end it’s a story of triumph, of how a group of young people basically changed the system and sped up drug approval and saved millions of lives. But also as I’m watching the movie, you’re seeing all of these people who are dead.
Gonsalves, who is studying in the Department of Epidemiology of Microbial Diseases and is co-director of the Global Health Justice Partnership between YSPH and Yale Law School, came of age as the epidemic was exploding. It was not, he notes, a good time to be young and gay.
A conservative era in American politics and culture was dawning, gay rights were largely unknown and then, of course, there was a sudden and terrifying rise of a deadly disease called AIDS.
These events profoundly affected Gonsalves, a young college student at Tufts University at the time who started out with an interest in medicine, discovered a love for Russian and English literature, became increasingly active in the fight against South Africa’s system of apartheid, quit school, waited tables and then fully committed himself to AIDS activism. The techniques of ACT-UP were, at times, radical, but its goal was to save lives when treatment was unavailable and the gay community carried little political clout.
Gonsalves first became involved with ACT-UP in Boston and then in New York City. He eventually co-founded TAG, an organization that is still active today and is a leader on HIV treatment policy. Most of the archival footage of him in the film centers on his work with TAG.
And, as the documentary portrays, he and fellow activists managed to do some amazing things. The film tells the story about how they reviewed, with only basic technology at their disposal, all the grants and contracts for AIDS research that had been submitted to the National Institutes of Health. They spent the summer of 1992 pouring through reams of documents in a one-bedroom apartment. They wrote a report that was critical of the gaps, the redundancies and the lack of leadership that they found.
The results were published in Science and Nature magazines and it attracted political attention from the highest levels of the U.S. government. The activists and their allies wanted nothing less than to reform the conduct of AIDS research at the NIH. A bill was introduced into Congress and it was approved.
“We staged a coup,” said Gonsalves, who was diagnosed with the virus in 1996 and has been on AIDS drugs ever since. “We were able to bring a whole set of new actors to the table.”
By the late 1990s, Gonsalves turned his attention to what was happening with AIDS beyond the United States. By then, drugs and treatment were available in richer countries and AIDS was no longer a death sentence. That was still not true in much of the rest of the world.
The International AIDS conference in Durban, South Africa, in 2000, changed the way many people thought about the epidemic, including Gonsalves. From that point onward his focus was on making AIDS drugs available in poorer regions of the world. He eventually moved to South Africa to give the effort his full attention.
After more than 20 years of AIDS activism, Gonsalves decided in 2008 that he would resume his formal education. He earned a bachelor’s degree in evolutionary biology from Yale and then decided to remain at Yale and pursue an advanced degree.
While most of his time now is devoted to teaching, studying and learning, Gonsalves is still an activist. While many millions of lives have been saved, there are millions more people who depend on American funding to receive the lifeline of drugs they need to stay alive. That funding is in doubt, he said. There is plenty of blame to go around; both Republicans and Democrats, including President Barack Obama, share some of the responsibility.
“We have the tools to end the epidemic, but political commitment is eroding,” Gonsalves said. “On the cusp of success the political mood has soured, along with the economy. We’re teetering on the brink of great success or a very, very far fall from the heights of hope into something pretty desperate again for millions of people.”
How to Survive a Plague will be screened on April 3 at Yale. Visit the website of the Center for Interdisciplinary Research on AIDS at Yale at cira.yale.edu to register for a seat.
This article was submitted by Denise L Meyer on February 23, 2013.