Jake Glaser Alive and Thriving
updated 04/07/2008 AT 01:00 AM EDT
•originally published 04/07/2008 AT 01:00 AM EDT
For years Glaser has shied away from talking about the tumultuous and painful events of his early life. Elizabeth Glaser contracted HIV during a transfusion in 1981 and unknowingly passed the virus to her two children, Jake and older sister Ariel, before dying of the disease in 1994. Jake witnessed up close his mom's battle with a then-mysterious killer—a fight chronicled in two PEOPLE cover stories. "I look back at that period as very emotional," says Glaser, naturally guarded and still struggling to make sense of his past. But at 23—inspired by the example of his mother, who created the Pediatric AIDS Foundation—he is ready to tell his story. "There were definitely parts of me that liked my parents' shadow and didn't like my parents' shadow," says Glaser. "And now I'm at a point where I'm starting to cast my own shadow."
Jake's sister Ariel was the first member of the family diagnosed in 1986—when the medical community knew little about AIDS. Members of the public recoiled with fear; Los Angeles preschools closed their doors to the Glasers' 4-year-old daughter; and classmates excluded her from birthday parties. The first effective treatment drug, AZT, won federal approval a year later only for adults. Harnessing the power of their Hollywood friends, the Glasers pleaded with drugmakers and won access to the drug for their daughter in 1988. But by then it was too late for Ariel; she died that year at the age of 7. Jake was just 3 at the time, and now remembers his sister mostly from pictures and family stories. "She was an angel," he says.
Life dealt Jake a gentler fate. He falls into a small subset of HIV-infected individuals who may remain symptom-free thanks to a mutation of the CCR5 gene that delays onset by restricting the virus' ability to enter white blood cells (see box). With the blessing of his physician, Dr. Richard Elion, Glaser stopped taking HIV medication altogether four years ago. Today he says he monitors his immune system with regular blood tests and remains on the lookout for any signs of illness. "It is a situation that requires a lot of vigilance," says Elion. "But if Jake plays his cards right, it's possible for him not to get sick."
Growing up in the spotlight was a blessing and, at times, a burden for Jake. Life could be lonely at home, with his dad's busy acting and directing career and his mom's consuming role as an activist—hosting the Clintons on Martha's Vineyard, hobnobbing with Elton John at fund-raisers. "Elizabeth was not always feeling spectacular, and she was working," recalls Susie Zeegen, one of Pediatric AIDS Foundation's cofounders. "It was not an enviable way for Jake to grow up.... He was obviously scared."
From the age of 8, Glaser took AZT and ddI, another AIDS drug, several times a day—running to the school nurse's office during lunch or dashing home during street hockey games. "Some of those pills were so gigantic," recalls friend Alexander Fiel. At times, Glaser now admits, he simply refused. "I would dump the pills down the toilet," he says. "I remember my dad would say, 'We're not leaving this table until you take your meds.'"
Elizabeth Glaser's work in raising AIDS awareness ended with her death in 1994. Jake was 10. "I remember that day very clearly," recalls Fiel. "Jake was very quiet. He went into the room with his mom and came out and had this blank stare." Jake says he tried his best to avoid thinking about what had happened. "You want family at that age; you want love," he says. "I spent years trying to block that out—to not think about anything that had happened.... It was a childish response."
Although Paul Michael Glaser remarried in 1996, Jake and his dad stayed close—taking fly-fishing trips to Utah and skiing in Aspen. "He was the lighthouse in the storm," recalls Jake.
But at 16, Jake says, he finally started to grieve the loss of his mom and sister. He made the decision, with his dad's approval, to leave the Glasers' house in Santa Monica for a boarding school in Idaho. "I wanted to experience other things," he says. For his 18th birthday, he had a tattoo with Elizabeth's and Ariel's initials inked across his back. "I feel their presence every day," he says. "I speak to them every night, even if it's just to say good night."
Today Jake is once again living in Los Angeles—after a semester of college in Washington, D.C.—and doing video production in New York City. "I love producing and directing," he says, "but the celebrity of Hollywood doesn't appeal to me." In his downtime, he grabs dinner with his dad or heads to the beach. "If we have a tank of gas," says surfing buddy Charlie Demere, "we'll go down the coast, checking out the surf."
Glaser's laid-back style seems to resonate with the college kids he meets as a spokesman for his mom's foundation. Questions invariably arise about his private life. "I tell them that I've told every girl about my HIV status," he says. "It's pretty simple. Use a condom. It's 99.9 percent effective." Though currently single, he hopes to marry and have a family using sperm-cleansing technology that stops the virus from being passed on to a spouse or child.
On a trip to Tanzania for his mother's foundation in 2006, he met an HIV-positive teen at a rural hospital. Despite assurances that Jake was HIV positive, the boy stood in disbelief that the athletic Glaser could possibly be infected. Then Jake gave him a hug. "We didn't need to say a word," Jake recalls. "I thought, 'Wow, you, like me, have seen so much—and you are still here.'"