REGENERATION – Defyning Moments

Jake Glaser Is Lifting the Stigma of HIV—and Raising Eyes to a Healthy Horizon

By Robin Rootenberg

Jake Glaser is a disruptor, advocate, adventurer and surfer living a happy, healthy life in Southern California. And he’s on a mission to show global brands that thousands of kids 18 and younger—which makes up a massive youth bulge confronting HIV in their communities in Africa and other countries around the world—are an audience that’s ready and able to live like Glaser does, with HIV. In other words, ready to live healthy, driven and ready to be ambassadors for a paradigm shift in education and the reality of living with HIV today.

For a time in the mid-2000s, Glaser was literally the poster child for his family’s nonprofit the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), advocating for funding, awareness and implementation of programs to stop mother-to-child transmission of HIV. His father is Paul Michael Glaser, the television and film actor who shot to fame as Detective David Starsky in the television series “Starsky & Hutch.” Elizabeth Glaser, Jake’s mother, was a second-grade teacher who received an HIV-infected blood transfusion and learned later that the virus had been passed on to both her children—Jake and his late sister, Ariel.

“She shattered the stereotype” of someone with HIV or AIDS, Glaser says about his mother. And she sprang into action with her husband and two best friends, forming the Elizabeth Glaser Pediatric AIDS Foundation to fund research. In 1987, the Glaser family lost Ariel to AIDS, leaving Elizabeth and Jake living with HIV. At that time, their future was grim. “My mother’s mission was to save my life, and to do so, she took a rather radical approach,” Glaser says. “She saw HIV as an opportunity to understand more than the disease itself—it was an opportunity to understand the immune system. The foundation funded interdisciplinary research by experts across a multitude of diseases at a time when it was taboo and doctors insisted they worked only in a specific field.”

This groundbreaking research perspective led to the successes we see today for managing HIV and AIDS. While Elizabeth was not going to rest until Jake was saved, she lost her life to AIDS in 1994, unable to see where the progress of her efforts would go. And another curveball came the Glaser family’s way: Both Jake and his father discovered they were protected by a rare genetic mutation. While Jake carries the HIV virus, it can’t develop into AIDS. As wonderful as that news was, Glaser’s sense of self was turned inside out for a second time.

From victim to victor

Research funded by Elizabeth Glaser Pediatric AIDS Foundation led to a breakthrough medication that could stop transmission from an HIV-positive mother to her child. But with the discovery of the genetic mutation protecting him, Glaser had an identity crisis. Although he was the face of EGPAF, he says, it turned out that the research and advances in antiretroviral medications was not what saved Glaser’s life, it was in fact this genetic mutation dating back thousands of years.

As Glaser met more of the HIV-positive community, he realized that he had never had to experience the process of disclosing his condition, considering his family story was global news. He had a slightly different experience and therefore a different perspective on how to approach this issue. He decided while he was the face of EGPAF, there was another path that was calling him, one that was broader than HIV, one that was looking to the future and not steeped in the past.

“I had to step back and find my way forward,” Glaser says. He began with the deepest question about himself: “What is it that makes Jake, Jake?”

Glaser answers his own question enthusiastically: “Alternative lifestyle and alternative sports! Surfing, going against the grain, changing public perspective and always pushing the envelope like my mother to innovate and grow into the future!” He adds that these pursuits represent acceptance, the essence of community. “You can participate [in action sports] as long as you are driving yourself to be your best self,” he explains. “It’s an idea of individuality as a part of a community that represents a beautiful way for all of us to live.”

Reclaiming the dream

This realization prompted Glaser to form Modern Advocate, a consulting agency helping brands to use action sports, alternative lifestyle, music, art, athletics and more as an educational platform to evolve their impact on generations of consumers through marketing and community activations.

“When we’re talking only about HIV, the only people who listen are infected, affected or working on it,” he explains. “Yet with treatment, HIV-positive people experience such a decrease in their viral load that they won’t pass the virus on and now live healthy and incredibly successful lives.” In fact, Glaser continues, “HIV-positive and HIV-negative couples are having HIV-negative kids. This tells me that the world is ready to approach HIV as a general health issue rather than a stigmatized life-threatening disease.”

Ultimately, Glaser says, “The world is also ready for marketing healthy lifestyles for HIV-positive people, and that will change the behavior of future generations.”

In other words, they will make the choices that support good health and prosperous lives.

A healthy (HIV-positive) lifestyle

To prove his point, Glaser—along with a dedicated team made up of director and filmmaker Tyler Rosen and HIV advocate Thomas Buttenschon—recently completed a pilot project in Zambia with the objective of changing perception of an HIV-positive audience from stigmatized medical minority to a highly attractive “in” crowd—a majority.

To present HIV in a different light, Glaser and his partners, along with support from the Elizabeth Glaser Pediatric AIDS Foundation, the AIDS Healthcare Foundation and others, organized a concert with a popular singer-songwriter and a time-limited offer of a free ticket to every person who got tested for HIV. The pilot included partners that provided the HIV testing and a road map to care and treatment after the fact, as well as peer-to-peer counseling and psychosocial support.

Glaser reports that in response to the concert invitation, 10,500 adolescents were tested in the four-week pilot. He describes both the event and the response as “a world away” from the ways we thought about people living with HIV 30 years ago.

The concert-goers even found themselves the “in” crowd at the show.

“Everyone had to take the same action to get to the concert, and therefore everyone in the audience already had that experience in common,” Glaser explains. “That meant all 10,500 of the concert-goers were united in the experience of embracing life, not running from it. It’s a step toward changing the idea of what HIV awareness is, what it should be, and a future that’s life-affirming, not life-taking.”

Glaser says 10 more concerts like this one are in the works.

A turning point

In addition to coaching brands, Glaser is coaching young HIV-positive ambassadors. He describes one boy who featured prominently in EGPAF marketing 10 years ago. That little boy went on to become a high-school wrestling champ and the captain of the varsity lacrosse team; he loves CrossFit and cooking and has an HIV-negative girlfriend. “Here is an HIV-positive young man who has accomplished more than your average high-school graduate who does not have to deal with HIV in his or her life,” observes Glaser.

“Now it’s time to tell the story that gives a new face to HIV/AIDS,” Glaser says. “People ask me what it’s like to live with HIV, to live with a life-threatening illness. My response is why don’t you tell me, as we all live with the most life-threatening illness, and that’s being human.”

He adds, “What my HIV has done for me is put my time on this earth into perspective, showing me the value of my life, something we can all achieve in our own way. This is our new reality around HIV. This story is being lived by so many other people because of the choices they make—and they are accomplishing heights your average individual would never reach. The world needs to know this.”

Glaser continues, “No one wants to find out they are HIV-positive. Our goal is to educate people and implement programs that reduce the transmission of HIV and promote healthy lifestyles, so that people who find out they are HIV-positive know their future can be bright, fulfilling and exciting when they take steps to care for their  health. That means knowing your status, seeking medical support and taking medication, which in today’s world, is as ‘normal’ as it gets.”

Imagine a Converse health club instead of a clinic or doctors whose white coats have a Nike Swoosh. That’s what Glaser envisions for the future of access to health care across Africa and the rest of the world. “Why not package and design centers for management and care the same way as a mall in a particular city?” he wonders.

“We’re at a turning point in the battle against HIV: We can evolve our perspective, look outside of the box and adopt new ideas, or stay stuck in the past and limit our potential to see the dream of an end to HIV become reality,” Glaser says. As he says he learned from his mother, sometimes all that’s needed is a change in perspective to propel ourselves toward new progress.

Video credit: Modern Advocate
Photo credit: Courtesy Elizabeth Glaser Pediatric AIDS Foundation; courtesy of Jake Glaser; courtesy of Elizabeth Glaser Pediatric AIDS Foundation

Background

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Author

Robin Rootenberg

Robin Rootenberg is managing editor for 24Life and 24Life TV. Nothing makes her happier than the possibility of one more person rediscovering the joy of movement, or trying something new. A UC Berkeley grad, her writing and communications career spans more than two decades, and she’s been running for even longer.

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