The Normal Heart — Ending AIDS through Activism

By Chelsea Bailey | August 25, 2014

Legendary HIV/AIDS activist Larry Kramer (second, right) poses with the cast and director of the upcoming HBO adaptation of his award-winning play, “The Normal Heart.”

Variety

The Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) is honored Ryan Murphy mentioned  during his speech at the 2014 Emmy Awards. We would like to congratulate Ryan Murphy, Larry Kramer, Mark Ruffalo, and the entire "The Normal Heart" cast and crew on their deserving Emmy win for television movieHBO’s reincarnation of Larry Kramer’s award-winning play is an excellent portrayal of how activism helped shape the global response to this devastating disease.

In honor of the well-deserved Emmy win, we’re taking a look at the role activists Elizabeth Glaser and Larry Kramer played in shifting the tide of the HIV/AIDS epidemic and bringing about the change needed to end AIDS.

Watch his powerful acceptance speech:

A Personal Call to Action

Elizabeth Glaser’s decision to speak out about HIV/AIDS was deeply personal.  After months of watching HIV drain the life from her daughter, Ariel, Elizabeth’s anger and fear hardened into steely resolve. She would later write in her memoir, “it felt as though no one cared about people suffering and dying from AIDS,” and that realization spurred her to act.  

“I had a new strength because now I was so angry, I had stopped being a victim,” she wrote.

When Ariel lost her battle to AIDS in 1988, Elizabeth threw herself into her advocacy work, launching the Pediatric AIDS Foundation to raise funds for pediatric HIV research and awareness about the impact HIV/AIDS had on children.

She also began sharing her family’s story with anyone who would listen and take action -- first with friends, then with members of congress, and eventually, with the President of the United States.

“When you’re battling AIDS … each person you meet can make a difference,” Elizabeth wrote.

Incrementally, Elizabeth was able to convince policymakers and researchers to prioritize children in HIV/AIDS research and policies. The Pediatric AIDS Foundation raised millions of dollars to fund investigations into prevention of mother-to-child transmission (PMTCT) of HIV in the United States and around the world.

But Elizabeth was one voice of many who were speaking out for marginalized groups. Even today children, minorities, homosexuals, and people living in resource-limited settings continue to face challenges to accessing the prevention, care, and treatment they need to end this epidemic. And they find advocates in unlikely places.

A Question of How

Larry Kramer’s name may be synonymous with gay rights and guerilla activism today, but in a recent interview with PBS’ “Frontline”  he explained that for a while it seemed as though he was shouting in a vacuum, even within his own community. 

After reading a 1981 “New York Times” article about a mysterious cancer that seemed to target gay men, Kramer began imploring his friends and notable doctors to look at the bigger picture. He told “Frontline” that a doctor once said to him, “We're only seeing the tip of the iceberg. I don't think anybody is going to give a damn, and it's really up to you guys to do something if you want to do anything."

For Kramer, “doing something” was never a question, it was a matter of getting people to listen. He launched an awareness campaign throughout the gay community in New York City, encouraging abstinence until doctors learned more about the disease.

“I was a pariah because I said, ‘cool it,’” he recalled. “People would cross the street rather than walk on the same side of the street with me.”

But their dismissal only fueled his fervor.  Kramer co-founded the Gay Men’s Health Crisis (GMHC), one of the world’s first providers of HIV/AIDS prevention, care, and advocacy, and the AIDS Coalition to Unleash Power (ACT UP), a guerilla protest organization founded on the principle that silence around HIV/AIDS is deadly.

That ideology inspired him to write his play, “The Normal Heart.” And that same principle defines the HBO film. This week, Kramer told "The New York Times" that despite his failing health, he’s fought hard to see the film’s premiere.

“There were so many times I never thought I would,” he said. “[The film is] about speaking up, being a buffalo if you have to, being mean if you have to. You don’t get more with honey than you do with vinegar.”

Humanizing a Catastrophe

Elizabeth and Larry had markedly different approaches to raising awareness about the toll of the HIV/AIDS epidemic. Elizabeth balanced her fierceness and anger with being protective of her family’s privacy. Conversely, Larry was blunt and thunderous, leading unruly protests outside of the U.S. Food and Drug Administration’s (FDA) headquarters, and penning harsh invectives against anyone who dared to turn a blind eye to the suffering endured by people living with HIV.

“In the beginning, [activists] were very confrontational because they needed to get our attention. Indeed, they did get our attention,” said Anthony Fauci, M.D., head of the U.S. National Institute of Allergy and Infectious Diseases (NIAID), in a 2008 interview with “The Body.”

As the head of NIAID, Dr. Fauci was a frequent target of Kramer’s unflinching editorials.  But according to Dr. Fauci, though Elizabeth and Kramer’s approaches were different, HIV/AIDS activism successfully humanized an incredibly politicized disease.

“I realized, although they were shouting at me and yelling at me, it really wasn't something personal. It was a great pain and a fear and a concern that they were feeling, and I was very empathetic towards that.”

Achieving an AIDS-free Future

It’s been said, to win a war, you have to start one. That certainly seemed true at the outset of the HIV/AIDS epidemic. Galvanized by the memories of the loved ones they’d lost, and haunted by the threat of their own HIV statuses, both Elizabeth Glaser and Larry Kramer became prominent voices in the HIV/AIDS movement. 

But their work is far from over.

We’ve made incredible progress in the fight against HIV/AIDS, but the silence around the issue is slowly suppressing our gains. There are currently more than 35 million people living with HIV/AIDS around the world. Every day nearly 700 children are newly infected with the virus.

EGPAF is committed to working toward an AIDS-free future and will do whatever it takes until no child has AIDS. It is possible, but like Elizabeth Glaser and Larry Kramer, we cannot achieve our goals alone.

*This blog was originally published on May 19, 2014.