A Star in the AIDS War : Elizabeth Glaser has become an unlikely but premier lobbyist in the campaign against a killer

WASHINGTON — This would be the happiest time in Elizabeth Glaser’s life if it were not the saddest. She is immersed in the flow of life and having a colossal effect on the world around her, yet this intense, driven woman and her family are fighting AIDS.

“If I didn’t have AIDS, if I hadn’t lost my daughter to it, if my son didn’t have it, if my life wasn’t so sad, I would be very fulfilled by what I’m doing,” says Glaser, 42.

“I’m realizing my highest potential right now. I am able to communicate about something that I think is important way beyond the scope of my own life.”

Even though this wealthy wife of actor/director Paul Michael Glaser is atypical of people confronted by Acquired Immune Deficiency Syndrome--she is not poor, not a minority, not an intravenous drug user, not gay--she has emerged as the most powerful person pressing Washington for more money to fight the epidemic.

“She is the premier lobbyist on this issue now,” says Tom Sheridan, whose AIDS Action Council is the largest lobbying group for federal AIDS legislation. “In fact, the thousands of people we represent could all gather under the Capitol Dome and not get half the attention that Elizabeth Glaser gets when she comes to town.”

Most AIDS activists simply do not have the cache to go right to then-President Ronald Reagan as Glaser did two years ago when she decided something was wrong with a world that didn’t pay enough attention to children dying of the disease.

Most AIDS activists do not begin a day in Washington with ABC’s Joan Lunden and end it with ABC’s Ted Koppel. They cannot plunk down comfortably in the offices of U.S. senators such as Howard Metzenbaum of Ohio and Orrin Hatch of Utah. Congressmen’s wives do not host lunches for them and cry at their compelling stories. And when other AIDS advocates testify before congressional committees, as Glaser did last week, they do not anger the First Lady.

That Elizabeth Glaser is not like most people threatened by this disease is precisely why she has been so effective in Washington, where deep pockets and glamour go a long way in impressing the powerful.

But while the Hollywood glint has propelled Glaser into an influential spot in the federal bureaucracy, that alone cannot be credited for her success. It has come from a combination of her husband’s celebrity, her own determination and the appalling reality of her story.

Glaser contracted the HIV virus that causes AIDS in 1981 from a contaminated blood transfusion after the birth of her daughter Ariel.

During breast-feeding, she unknowingly passed the virus to her daughter, and then passed it to her son, born three years later. Ariel died in 1988. Elizabeth and her son both test HIV-positive, but so far show no symptoms of AIDS. The family continued to try to keep their tragedy private--even after Elizabeth had begun traveling to Washington on behalf of AIDS causes in early 1988.

But then in August, 1989, a year after Ariel’s death, the Glasers learned that a national tabloid planned to publish their story. Fearful of distortion, they went to the press themselves.

“If the (tabloid) did anything good, it forced Elizabeth’s hand and all the horrible things we all worried about happening didn’t happen,” says Susan Zeegen, a longtime friend who along with Glaser and another friend, Susan De Laurentis, founded the L.A.-based Pediatric AIDS Foundation two years ago. “Her story has raised enormous awareness and a lot of money too. And all her friends stuck by her.”

Joel Johnson, Metzenbaum’s legislative director, tries to explain why people in Washington listen to Glaser: “She simply is not like most people who come here, make a case and then go home in hopes that everybody will do the right thing. She doesn’t let go of a contact or anybody she can talk to.”

AIDS advocates have expressed concern that Glaser’s impressive pitch for pediatric AIDS funding--there are 2,055 children younger than 13 who are known to have the disease--might distract politicians from the problems of the other 120,000 people who have AIDS, and who, unlike children, are controversial back in the district.

“Who is going to vote against Elizabeth Glaser?” asks Sheridan of the AIDS Action Council. “She has the public image that members of Congress respond to. Believe me, I’ve been lobbying for seven years and I can’t call members of Congress at home. ‘Nightline’ isn’t interviewing me. She has a lot of power and it’s important how she uses it.”

Glaser says she tries to “carry this mantle” responsibly. In every speech, every interview, every casual conversation, Glaser says she is not lobbying (she even scoffs at the word, saying it implies she gets paid for her work, which she doesn’t) for children alone.

“Every person with AIDS is somebody’s child,” she lectures a reporter. “AIDS is not a political issue. It’s a virus and it kills people, no matter who they are.”

During a congressional budget hearing here last week, Glaser called on the federal government to spend $70 million more in 1991 on pediatric AIDS research and care but emphasized that money must not be allocated at the expense of other AIDS programs.

“The overall AIDS budget must have what it needs and within that umbrella a pediatric budget must be identified,” she testified. “But the pediatric dollars must not be taken from other AIDS programs already under-funded.”

There is an urgency in her voice and an intensity in her stare that belie a warmth she exudes.

To be with her is to wonder: What was it like before tragedy swamped her life?

“Paul Michael Glaser and his beautiful wife were like the Ken and Barbie of Hollywood: gorgeous, successful, loving, great friends, great fun, very private, very consumed with each other,” says Zeegen.

And now Elizabeth Glaser is completely consumed by a great struggle for life--marshaling her friends and family to raise money, almost $3 million so far, for the Pediatric AIDS Foundation, flying off to Washington, putting the squeeze on politicians, talking on the phone, making connections and finding new ways to make the world realize that the worst thing that can happen to a mother has happened to her--she lost a child--and no one else should have to face that, particularly not her again.

“Sometimes Elizabeth will be off to Washington and she’ll say, ‘They want the victim-mother from Hollywood,’ ” Zeegen explains, “and short of anything that would be harmful to her children and her husband, she’s not proud, she’ll go out and do it.”

It is 8:30 in the morning and a limousine carrying Elizabeth and Paul Michael Glaser and their entourage zooms past the sandstone and marble monuments of Washington to Capitol Hill. Elizabeth and Susan De Laurentis have just appeared on “Good Morning America” and are frenetically reviewing their performances.

“You we’re greeeeeeeeeat, “ Elizabeth squeals at De Laurentis, slapping her the high five and dissolving into laughter. Then, like a giddy school teacher, Elizabeth points out the sites to Paul, who is sleepily watching the landmarks whiz by.

Although Elizabeth Glaser and De Laurentis have been charging around Washington for two years in an effort to jolt this town into action to help AIDS-inflicted children and families, this is the first time Elizabeth is testifying at a congressional budget hearing before an inferno of television lights.

And this is the first time she has brought Paul along for an appearance.

“This is really big,” Elizabeth keeps saying. “Everyone will be there.”

Actually, the hearing room is jammed with reporters and pediatric AIDS experts, who are also to testify. But few congressmen show up. Only the two California members of the nine-member Budget Committee are seated on the wooden dais. Glaser doesn’t seem dismayed. In fact, she seems thrilled to finally have an audience to present a substantive look at the issues.

Paul is a reluctant accomplice. “I am here to support my wife,” he says tersely, the private man annoyed that he is being asked to expose his deepest pain. “I’m the supporting team.”

And yet, while Paul is the Hollywood star the cameras have come to gawk at, this is Elizabeth’s show. In Washington, among the bureaucrats and politicians, she is the star.

A small, thin woman with green eyes and frosted hair cut in a fashion she admits has been out of style for years, Elizabeth blends well into conservative Washington. She wears a green and black print dress, flesh-colored stockings, low black heels and the requisite string of pearls.

The budget hearing lasts hours but the media stays only long enough to hear the Glasers’ testimony. While Paul talks, Elizabeth never takes her eyes off him. His delivery is dramatic and moving.

“I know there are no guarantees,” he says, “My family is doing the best they can in a most difficult situation.”

Elizabeth is next. Although she had hoped to avoid tears, her voice breaks as soon as she begins talking. “No mother ever really believes her child is going to die,” she says tearfully. “I didn’t.”

After their testimony the Glasers are chased down the halls of the Rayburn Office Building by a media swarm and they submit to a series of interviews in U.S. Rep. Barbara Boxer’s crowded office.

It soon becomes apparent that one of the important sound bites of the day will be Elizabeth’s comment at the hearing that the Bushes need to get more involved in fighting the epidemic. Elizabeth explains that she had asked to have Mrs. Bush follow in Reagan’s footsteps and make a public service announcement about people not discriminating against children with AIDS. But Elizabeth has not received a response from the White House. Later, word comes back from Mrs. Bush’s press office that the First Lady feels sideswiped by the Glasers’ remarks. “Mrs. Bush is going to hate me, I know,” Elizabeth says, “but what I’m saying is important--we have to raise awareness and the Bushes are among the few people who can do it.” And in all her interviews she continues to press the need to get the First Lady “on board.”

Later, Elizabeth Glaser and De Laurentis begin a marathon of meetings, racing through the labyrinth of federal buildings loaded down with position papers and T-shirts designed by a little boy named Zachary who died of AIDS.

The two women have a series of 15-minute meetings with congressmen or their aides, with whom they deftly discuss the complicated budget negotiations.

Two years ago, Glaser couldn’t have found her way from the offices of the Senate to the House, she admits, and she couldn’t have differentiated among all the acronyms--like OMB (Office of Management and Budget) or FTE (Full Time Equivalent federal employee).

But now she lights up when a congressman explains to her about “downward negotiations” during budget time and laments how the “peace dividend” will be spent.

“Sometimes, when we’re running around like this and talking in this other language I feel like we’re in Las Vegas,” Glaser says, “and we’ve completely lost a sense of time and reality.”

She also acknowledges that Washington is a fantastic escape: “When I’m here doing business I have to separate myself from emotional reality. I have to close the dam because I can’t be effective here if I let all the emotions rule me.

“So I turn it off here and when I go home the emotion I’ve kept away comes flooding back. It takes two days for me to settle down. We know that now.”

By late afternoon of the next day after a lunch meeting with congressional wives, Glaser and De Laurentis regroup in Sen. Metzenbaum’s sprawling office, making themselves at home. Sen. Hatch, who sent Glaser flowers after seeing her on television, has an office across the hall and she goes to thank his staff.

Republican Hatch and Democrat Metzenbaum have made a rare bipartisan effort by taking Glaser under their wing. Last year they organized a high-roller fund-raiser for the Pediatric AIDS Foundation in Washington that netted $1 million. The senators provided the premier donors; Glaser brought the stars.

“Are they all using me because of my Hollywood connection?” she asks herself, groping for an explanation for her fantastic success in gaining political access here. “I don’t think so. All of these relationships were in place and took a lot of work.

“I have a strong-enough understanding of issues now,” she explains on the way back to her hotel, “but sometimes I don’t understand the roadblocks we’re facing. It’s good to have people in these offices to turn to. When I came to Washington that first time, it was Government 101 for me. But it gets easier every time.”

Very little in Elizabeth Glaser’s life prepared her for her current crusade, but, as she explains it, she was raised to reach out to others.

She grew up in the upper-middle class suburbs of Long Island, the daughter of a businessman and a director of urban renewal.

“I was raised to be politically aware and astute and committed to issues of helping other people,” she says. “My mother particularly taught me this. We never talked about those things in fiery debate. My mother simply was an example.”

After earning a master’s degree in education, Glaser ended up in Los Angeles, where she taught elementary school and fell into what began as a “very L.A.” type of romance with Paul Michael Glaser, whom she met while driving down a boulevard. Their life in Hollywood, says Elizabeth, was never glamorous because they chose to be “very private people. It wasn’t America’s fantasy of Hollywood. I cooked my own meals. I spent a lot of time with my friends. My focus was always children, so when we had our first child I stopped working. I always had wanted to raise my children.”

If there was any one moment in which her life was completely transformed, it was not when she found out that she and her children had been exposed to a fatal disease, nor even the day that her daughter died.

Those are surreal memories that she still finds hard to comprehend and discuss.

What remains sharpest in her memory is the day she decided to “change the world.” It happened in March, 1988, and she was sobbing on the steps of the hospital where a doctor had just told her that her daughter Ariel had 48 hours to live.

She turned to Lucy Fisher, one of her best friends, and in a haze of tears blurted out, “I have to change the world. I have to see the President. This can’t be happening.”

An ordinary person would have comforted her pal with a hug, but Fisher was no ordinary friend. She is also the daughter-in-law of Charles Wick, who was Reagan’s chief of the U. S. Information Agency and one of his best friends.

“I was so frustrated,” recalls Glaser. “I had been fighting for Ari’s life, keeping it all quiet from the community . . . yet she was going to die anyway. I felt I had just better do something about it or (my son) and I were also going to die.

“There was so much wrong I didn’t know where to begin,” she says.

Over the past years, she has not known where to stop.

She will not be “finished,” she says, until the government and the doctors take care of the AIDS problem, until there is enough money in the federal budget to root out every possibility and perhaps discover a cure for AIDS.

“You know, there is very little ego involved in all this,” she says. “I’m not looking for recognition . . . publicity was the last thing I wanted to have.”

But now she is using it to get what she wants:

“One of the things that my life has taught me is that I have nothing to lose by being honest. I don’t have the time to play games. I’m also talking about an issue that people really do care about. And until it is handled appropriately, I’m going to keep talking.”