They were a couple to be envied. Elizabeth Glaser was the exhibit director of the Los Angeles Children's Museum. Paul Michael Glaser was an international star from TV's "Starsky and Hutch" who had found a second career as a movie director. In 1981, they were expecting their first child.
Then their world started crumbling.
Elizabeth Glaser was rushed to Cedars-Sinai Medical Center, hemorrhaging heavily in her ninth month. Doctors safely delivered her daughter. But Elizabeth's bleeding wouldn't stop. And, for the next four hours, she was transfused with seven pints of blood.
It wasn't until three weeks later that Elizabeth Glaser read a newspaper article describing the risk at that time of developing acquired immune deficiency syndrome from tranfusions. Panicked, she called her physician.
He was calm and reassuring. "Elizabeth," he said, "your nightmare is over."
Tested for Virus
But her family's nightmare had just begun. Four years later, daughter Ariel became stubbornly sick with something the doctors couldn't pin down. When doctors finally tested Ariel for human immunodeficiency virus, which causes AIDS, the Glasers were told the test was just a precaution. But Ariel tested positive. As each family member subsequently was tested, the Glasers would confront more horrors--and a horrible truth. Elizabeth, who also tested HIV positive, had passed the virus to Ariel and their 1 1/2-year-old son. Only Paul was not infected.
Ariel, the daughter whom Elizabeth had lovingly and innocently breast fed for eight months, died three years later, right after her seventh birthday. So far, Elizabeth, who has been taking the drug AZT for a year and a half, and their son, now a healthy, wiggly 5-year-old, have not developed AIDS, but the family lives daily with the specter of the disease.
Tragically, the Glasers' story is not all that uncommon anymore. Across the country, there are hundreds of AIDS families, people whose lives have been invaded by a deadly enemy not through drug abuse or homosexual contact, but through a simple blood transfusion. Although Elizabeth has worked diligently and effectively behind the scenes for AIDS education and research, the family would not be going public now, but for the circumstance of their celebrity.
For four years, the Glasers have tried to create a safe, normal life for their children away from the public eye. But now, on the first anniversary of their daughter's death, that cocoon has been threatened. Tabloid reporters dug up the story of Paul Michael Glaser's AIDS family and, the Glasers have been told, a story is scheduled to appear in the National Enquirer. The Enquirer refuses to comment.
"We appealed to the Enquirer," says Paul. "We begged them not to run the story, but they said it was newsworthy."
"For Paul and me," says Elizabeth, "this is very frightening to imagine that people we don't know will find out the most private parts of our lives. But our fear is the greatest for our son. He does not know that he isn't a normal, healthy little boy, and he doesn't know that his mother isn't a normal, healthy mom. It's our right to tell him when he is strong enough and old enough to handle the information. Now we may not have that choice."
So the Glasers decided to come forward, to tell their painful but courageous story to View.
Ariel was any father's fantasy of a daughter, an extremely bright, artistically gifted child with a lively imagination; her brother, who's the image of Huckleberry Finn, was a rambunctious toddler. Together, they turned their parents' stately, Westside Mediterranean home into one big playground. The atrium was littered with bicycles and basketball hoops. The living room had a rocking horse. Happy face stickers were pasted on the arm of an antique mission chair. Often, Elizabeth, the former museum director who quit her job to be with the children, would entertain the entire preschool on rainy days.
But four years ago, while the family was in Miami where Paul was working, Ariel suddenly became so sick they rushed her to a hospital. Though Ariel's red blood cell count was dangerously low, doctors assured them she would recover. Eight months later, she still wasn't well. An immunologist suggested they test for HIV. "Don't worry," their doctor said. "We just have to rule out all possibilities."
Then they got the phone call that would change their lives.
"That day in May we found out a reality that an entire family was going to be lost," she says, reflecting the pessimism of the time. "We had been dealt the worst hand of cards any family could have gotten. I thought about throwing my hands up and giving up. But we decided to play that hand offensively."
Adds Paul, "We have grown up a hell of a lot. It was either grow up or perish."
"Lesser men would have walked," says Elizabeth, looking at her husband with admiration. "He didn't flinch. He never made us feel we were anything but a family."
Paul has found it harder than Elizabeth to share their family's story. "It makes it even more real for him," says a family friend. "People who don't know him will now treat him differently. He will be burdened with their pity. He hates pity."
Paul himself says that "this can't be a story about tragedy. This has to be a story about how we rise above our fears, how we all have to be stronger than we ever thought we could be.
"Our family situation shows how hard it is to get this disease," says Paul. Although Ariel had contracted the virus through breast feeding and their son in the womb, Paul was unscathed.
"Until we found out our family was infected," he says, "Elizabeth and I had a natural sexual relationship. I wasn't infected by either child, and they did everything a child can do to a parent: they bled on me, they crapped on me, they hugged me and they kissed me. And I still don't have it."
But society was a lot more wary. At the time, the newspapers were full of horror stories about AIDS families being shunned, their homes burned and their kids kicked out of schools. Their doctors said the world was not ready for their family, and advised them only to tell school officials. Instead, they pulled Ariel out of school so they wouldn't have to face the ostracism. "To this day, I regret that Ariel did not finish nursery school," says Elizabeth.
They withdrew. Elizabeth stopped making new friends. She stopped reading the newspaper and watching TV because the AIDS reports only scared her. "I began to feel like a leper," she says. "If I went to a home and drank a glass of water, I worried that they wouldn't wash it carefully enough. I felt I was dangerous."
Fearfully, the Glasers told their closest friends and parents of their children's playmates. Frightened of a disease without a cure, some friends stopped calling. Others refused to let their kids play with either Ariel or her brother. Elizabeth had recurring nightmares that all her friends would link arms and block their house, never letting anybody in to see them.
"I was angry at people's rejections," says Paul, who played golf so ruthlessly that he injured his back. "I was afraid we would be totally isolated. Back then it was the black plague."
But there were some heroes. Ariel, who was healthy enough to attend school, had been accepted earlier at Crossroads, a private Westside elementary school. Now they had to go back and tell the headmaster, Paul Cummins, that Ariel had AIDS. Cummins stood up and put his arms around them. "We want you in our family." Even when Ariel was too sick to go back to school, an administrator personally came three times a week to tutor her.
"As a parent you never believe your child is going to die," says Elizabeth, choking up. But two years ago, Ariel grew weaker. Elizabeth called Ariel's doctor, yelling, "She's starting to fail. We've got to get AZT." But AZT, still the only medication approved for treating AIDS' underlying viral infection, wasn't being used in children.
'It Was Too Late'
"I was desperate," says Elizabeth, balling up Kleenex after Kleenex in her hand in reaction to the painful memories. "I could feel she was slipping through my fingers. She couldn't talk. She couldn't walk very well. Paul and I became nurses. We would feed her every night by IV ourselves. The nurses came just to hold our hands.
"She finally got AZT, but it was too late," she says.
When Ariel was hospitalized in April, 1988, failing so quickly that they thought she would die in 48 hours, Elizabeth sat with friends and cried. "We have to do something. My daughter is going to die. My son could die. There is something wrong in the world that research isn't being handled with the speed and care that it needs. I have to get to the President of the United States. I have to get to senators."
Although she realized it could compromise her privacy, she decided she was going to Washington. She sat at the kitchen table with a friend, public relations specialist Josh Baran, and made a list of people she had to talk to--Ronald Reagan, Surgeon General C. Everett Koop, Kitty Dukakis, Barbara Bush, congressmen, senators and Admiral James D. Watkins, who was heading Reagan's AIDS task force.
The mother began prowling the halls of Congress. At one-on-one sessions with key legislators and their aides, she told her personal story, pleading for more funds for clinical trials to test experimental drugs. When it came time to vote for appropriations, lawmakers increased the pediatric AIDS budget from $3.3 million to $8.8 million to fund 13 pediatric clinical treatment units instead of four. "Overnight, she came up with $5 million that had an incredible impact on pediatric AIDS," says Dr. Richard Stiehm, her daughter's doctor who is also co-director of the Southern California Pediatric AIDS Consortium.
"She keeps people from running away from the subject of AIDS," says Sandy Brock, wife of Bill Brock, the former secretary of labor under Reagan who has helped her set up meetings. "She has (the AIDS virus), but she isn't black, she isn't poor, she isn't homosexual, she isn't a drug user. She is like the rest of us. She makes us confront our anger and our prejudices and start doing something."
Rising Above Pain
Elizabeth so moved Kitty Dukakis on the campaign trail that the candidate's wife canceled several appointments and asked her to come back to talk. "Nobody in that short of time has touched me so," says Dukakis. "I have never been with anybody who could rise above their own pain to help so many other people."
But she wanted to do more. Through a family friend, the ex-school teacher from Long Island arranged a private meeting with Ronald and Nancy Reagan in their White House living room. For an hour and a half, the President listened intently to her.
Later, Admiral Watkins called to tell her, "You've done the impossible. You have moved this man." Apparently, the President talked about her for 10 minutes at a high-level meeting with Watkins and Vice President George Bush to review his Administration's first AIDS report. But Elizabeth was disappointed with the lack of results. "The Reagans were wonderful, but in reality, his Administration wasn't going to do more for AIDS. It was a letdown."
After Ariel died last August, Elizabeth plunged all her energy into starting a private foundation to fill the funding gap until the federal money began to flow: "Even if the federal government said they were going to give $20 million for pediatric AIDS research, it would be a year and a half before that money was in the hands of researchers. It would be too late for a lot of kids. It was too late for my daughter."
Started AIDS Foundation
With two childhood friends, she installed a phone and an Apple computer in a room so small that, if all of them were there at the same time, two would have to work on the floor. "You fund a lot of charity bureaucracies," says Bob Burkett, who oversees philanthropic affairs for producer Ted Field and his wife, Susie. "With Elizabeth's Pediatric AIDS Foundation, you know all the money goes to research."
A dynamo with fund raising ( "If you get her in the door, she's successful," says Burkett), she raised $2.2 million in eight months that is going into 40 research grants. "She's so effective because it's her life, it's her life story and her life tragedy," says PAF co-founder Susan DeLaurentis. Sometimes, though, she is so bossy that she makes volunteers want to wring her neck. But those same people realize little would be accomplished without her passion, drive and single-mindedness.
After Democratic Sen. Howard Metzenbaum and Republican Sen. Orrin Hatch met with her, they offered to co-host a Washington fund-raiser. "I'll do anything for Elizabeth, anything I can," says Hatch. The benefit, which raised $1 million, united conservatives, liberals, Washington socialites and Hollywood movie stars. "Can you imagine," says Kitty Dukakis, who worked with the very Republican Sandy Brock on the dinner, "Elizabeth got Sandy and me to work effectively together. Metzenbaum and Hatch. That's leadership."
"Her work is keeping her alive," says Sandy Brock. But Stiehm, her children's doctor, reminds that her own future is still uncertain. "She's like an alcoholic. She has to plan every day one at a time. She is buying time until better treatment comes along."
Now, the Glasers want time to protect their son until he is ready to absorb the news. Although they fervently hope that they can get through the barrage of media attention without telling him, they have had to share their secret with a lot of people.
This week, Elizabeth told her 91-year-old grandmother. Together, Elizabeth and Paul stood before 200 parents at their son's preschool to tell them that a boy their children plays with daily has tested HIV positive. The room was so packed that people had to stand at the sides. After they told their story, there was a stunned silence. For a moment, Elizabeth worried her worst nightmares of rejection were coming true. But then one parent raised his hand and asked, "When can your son come and play?"
The Glasers hope the rest of the world will embrace them as wholeheartedly.