Glaser, Elizabeth (1947–1994)

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Glaser, Elizabeth (1947–1994)

American AIDS activist who founded the nonprofit Pediatric AIDS Foundation (PAF). Name variations: Betsy Meyer. Born Elizabeth Ann Meyer in New York City in 1947; died of complications from AIDS in Santa Monica, California, on December 3, 1994; only daughter of Max (a businessman) and Edith Meyer (an urban renewal planner); graduated from the University of Wisconsin, 1969; received an M.A. from Boston University, 1970; married Hank Koran-sky, in 1971 (divorced 1973); married Paul Michael Glaser (an actor and director), on August 24, 1980; children: Ariel (August 4, 1981–1988); Jake (b. October 25, 1984).

In 1981, just after giving birth to her daughter Ariel , Elizabeth Glaser was administered blood transfusions amounting to seven pints. Four years later, that same daughter became mysteriously ill with stomach cramps and began to tire easily; her lips went white. Though the doctors knew about Glaser's blood transfusions, Ariel underwent a year of tests—for lupus, for leukemia. The diagnosis was not determined until the following May of 1986: Ariel had AIDS, while Elizabeth and son Jake, who had been born in 1984, were both HIV positive. Unknowingly, Glaser had contracted the HIV virus from contaminated blood and had passed the disease to her daughter from her breast milk and to her son in utero. "The prevalent medical thinking at the time was that you needed to have direct contact with blood or semen to catch the virus," said Glaser. "There was nothing about breast milk as a source of transmission."

The doctors warned the Glasers to keep this a closely guarded secret; other families who were dealing openly with AIDS were being treated like social pariahs. It was a time when Ryan White was barred from junior high, when the Ray family, whose three hemophiliac sons had contacted AIDS, returned home to find their house burned to the ground. "From that moment on I had no choice but to become intentionally schizophrenic," said Glaser. "What I felt and what I was thinking were one thing, and what I presented to my children and the rest of the outside world was another."

The Glasers were told they had to follow guidelines from the Center for Disease Control (CDC); they had to notify Ariel's preschool or pull her out. They did as instructed, and Ariel's summer camp refused to take her. When Elizabeth Glaser told close friends, forcing them to join in the "conspiracy," there was sympathy at first, then fear, then restrictions. Her children were not allowed to play with friends' children. Therapists and psychiatrists were unwilling to work with a child with AIDS; even Glaser's yoga teacher asked her to leave the class.

In 1986, though the U.S. Surgeon General C. Everett Koop had debunked these theories, there was still speculation that AIDS could be caused from saliva, kissing, sneezing, and mosquito bites. Koop advocated a massive sex-education campaign in the schools, called for an end to discrimination for those with AIDS, and said that quarantining AIDS victims was ludicrous. But those in power, often led by Senator Jesse Helms, ignored Koop and pushed their own agenda, demanding mandatory testing while opposing any kind of sex education or warnings in schools.

"What could have stopped the fear and hysteria was strong leadership from the Reagan administration," wrote Glaser. "But in those early years of the epidemic, that leadership was absent." The president ignored Koop's report and denied the surgeon general's request to meet with him. Reagan's first speech about AIDS would not come until the middle of 1987, six years after the onset of the epidemic, after over 20,000 Americans had died. By the end of 1987, no one had even begun a study on maternal transmission of AIDS. Scientists knew it happened; they didn't know how it happened.

We had been dealt the worst hand of cards any family could have gotten. I thought about throwing up my hands and giving up. But we decided to play that hand offensively.
—Elizabeth Glaser

Doctors wanted to start Ariel on AZT, which blocks the onset of symptoms and slows deterioration, but the drug had not been approved for pediatric use and no one was doing the testing. When seven-year-old Ariel died in 1988, Glaser felt dead, too. "I could no longer see any beauty in the world." Her second reaction was to help the living. "Different people do different things when they feel vulnerable. I take action so I don't feel helpless." Elizabeth Glaser became an AIDS activist, but gave Ariel most of the credit. "She taught me to love when all I wanted to do was hate; she taught me to help others when all I wanted to do was help myself."

Elizabeth Glaser's life had always revolved around children. She grew up in Hewlett Harbor, a small town on Long Island, along with her younger brother Peter. After Elizabeth and Peter started school, their mother Edith Meyer became director of urban renewal for the Town of Hempstead and initiated low-income housing for the poor. Elizabeth's father was vice president for the General Cigar Company. Three years after receiving her M.A. in early childhood education from Boston University in 1970, Glaser moved to Los Angeles to teach at the Center for Early Education in West Hollywood (1973–79); she then helped found the Los Angeles Children's Museum and was its first education and program director.

In 1975, she met actor Paul Michael Glaser who had just been signed for the TV series "Starsky and Hutch." Both the series and the meeting proved successful, and the Glasers were married in August 1980. Elizabeth set about doing what she had always wanted to do, raise a family. But just before Ariel arrived in 1981, Glaser was rushed to Cedars-Sinai Medical Center because of hemorrhaging. Soon after, she was given those seven pints of tainted blood.

During the hours spent in hospital corridors, she had learned to fight back—to question, challenge, and refute doctors. At the moment of Ariel's death, Glaser wanted to hold her, though the doctors tried to dissuade her. "I made them let me pick her up. I sat in the chair and I held her on my lap as I had done so many times before. There were no tubes and the machines had been turned off. I sat there and rocked her and held her. … I whispered, 'I love you, Ari,' a hun dred times over and over in her ear."

Now, Glaser wanted to learn how to challenge presidents. "I can't keep sitting here in Santa Monica making a cozy little life for my family if we are all going to die," she told a friend. "Something is very wrong." She had been waiting, she said, for an angel to intervene. In the absence of angels, she would have to take up the slack. She had to talk to President Reagan, even if it meant putting the family secret at risk. If she was going to make a dent against AIDS indifference, she knew she needed a bold stroke. So, she set out to save her son.

Glaser taught herself all she could about AIDS, then met with those who could tell her more, including C. Everett Koop. Her aim was to obtain more money for pediatric clinical trial units (PCTUs); at that time, the federal budget for PCTUs was $3.3 million, enough to fund only four or five clinical trials in the entire country. She wanted to find out the reason for the delay in getting AZT to children. On that first trip to Washington, she was amazed at what the experts did not know. She returned home without a presidential meeting but a new awareness: no one was fighting for the children. Families of AIDS children were not speaking out because, like the Glasers, they were in hiding. Said Glaser:

It seemed that no one really cared about people with AIDS. Our lives were expendable. If AIDS had struck white middle-class and heterosexual Americans, I firmly believe the epidemic would have been handled differently. But gays and drug users, blacks and Chicanos and poor whites? Were they written off as people we would never miss? Whose decision was this?

But a white, heterosexual, middle- to upper-class woman from Hollywood, a peer of those in power, might help change some views. "I felt a mantle of responsibility descend over my shoulders. It was a frightening and unforgettable moment."

With close friends Susan Zeegen and Susan De Laurentis , Glaser founded the nonprofit Pediatric AIDS Foundation (PAF) in 1988. At first, there was no office and no salary, only a name, home phones, and a kitchen table. Abetted by two $500,000 donations from Steven Spielberg and philanthropist Vera List , their goal was to raise $2 to $3 million a year for research. For the sake of her son, Glaser was still keeping her own illness private; her involvement with the Foundation remained a tightly guarded secret.

On the next trip to Washington, when she finally met with the president and Nancy Reagan , they listened attentively and seemed deeply moved; Reagan asked what he could do. "I want you to do two things," replied Glaser. "I want you to be a leader in the struggle against AIDS so that my children, and all children, can go to school and continue to live valuable lives, so that no one with AIDS need worry about discrimination.

Secondly, you have commissioned a report on the epidemic. … I ask you to pay attention to that report." Though Glaser felt that the Reagans were sincere, the White House shelved the report.

But her efforts were not totally futile. Senator Lowell Weicker began pushing for an added $9 million for pediatric AIDS in the 1989 Congressional budget. Senators Howard Metzenbaum and Orrin Hatch agreed to sponsor a high-powered reception on Capitol Hill in the spring of 1989. Hatch would later join hands with Ted Kennedy to sponsor the bipartisan Kennedy-Hatch Emergency Care Bill for AIDS (subsequently called the Ryan White Bill), though it was hampered by Jesse Helms, who kept attaching amendments to ensure its defeat. Helms "seems to believe AIDS is a curse from God," said Glaser.

But each time Glaser confided in someone, she increased the risk of exposure. After every meeting where she candidly used her story to elicit help, she would beg that it remain out of reach of the press. To protect their children, the Glasers had managed to shield their private life for three years and three months. Then, friends began to get odd phone calls: a man, claiming to be from their insurance company, wanted verification as to Ariel's cause of death; a man called her sister-in-law saying he was a pediatric AIDS researcher from the Centers for Disease Control and wanted to commiserate with her about Ari's death; a man, claiming to be a new neighbor, tried to talk their housesitter into letting him into the Glaser house while they were gone. Then one day, the doorbell rang. When their housekeeper answered the door, the same man was standing there. "Aren't you afraid to work here?" he said. "Don't you know this family has AIDS?" He then went to UCLA and said his father was a rabbi and he was planning a special memorial service for Ariel; he asked the nurse if she would share a few stories about the girl. Unfortunately, the woman did. Shortly after that, the National Enquirer telephoned.

The tabloid said it was willing to bargain. If they could get one quote from the Glasers, they would not run the whole story, only the death of Ariel, no mention of Elizabeth or Jake. The Glasers knew it was time to go public. They called a meeting with the parents at Jake's school and met with the Los Angeles Times. The Times' article came out on Friday, August 25, 1989. Despite her fears, all but two families of Jake's school were supportive. Glaser was now free to be actively and publicly involved with the Foundation. It was a relief, she said.

Glaser's high-profile activism caught the attention of the media. In late 1988, when she convinced the Bush administration to increase funding for AIDS pediatric research, the press was there. The Glasers' February 4, 1990, appearance on "60 Minutes" was seen by millions. But despite the promises, Washington did little. In 1992, a frustrated Glaser appeared before, and galvanized, the Democratic National Convention: "I am here tonight," she began, "because my son and I may not survive another four years of leaders who say they care—but do nothing." (That same year, Mary Fisher spoke at the Republican National Convention.)

Fisher, Mary (c. 1946—)

American AIDS activist. Born Mary Fisher in Detroit, Michigan, around 1946; daughter of Max Fisher (an industrialist and philanthropist); married Brian Campbell (divorced); children: (adopted) Zachary; Max (b. 1988).

In July 1991, Mary Fisher was in her early 40s when she learned that she had contracted AIDS from her ex-husband who had recently died. A wealthy Republican, Fisher had a great deal of cachet when she spoke before the Republican National Convention in 1992. "Who could forget the demure blonde at the podium," writes Katie Couric , "speaking to a sea of delegates who moments earlier were smiling, waving signs, and whooping it up. Suddenly the only sound was Mary's voice, sweet yet strong. Her pain, so raw, her honesty, so riveting—a stark contrast to the dogmatic assertions that often characterize such gatherings." Mary Fisher exhorted the nation to stop stigmatizing those who find themselves HIV positive. They come from all walks of life, she maintained, rich and poor, black and white, gay and straight, old and young. Fisher, who continued to speak across the country, published three books: Sleep with the Angels, a compilation of 25 of her speeches, I'll Not Go Quietly (1995), and My Name Is Mary (1996).