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Love's Legacy Saved Many From AIDS

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Saving Jake.

It was his mother's obsession. Nothing mattered more to Elizabeth Glaser and the two close friends who helped her launch the Pediatric AIDS Foundation 15 years ago this past week.

Jake, 4, was HIV-positive. Glaser, the wife of actor/writer/director Paul Glaser, knew her son was living on borrowed time. Her 7-year-old daughter, Ariel, had died of AIDS three months earlier.

Glaser was convinced that Ariel might have lived if the AIDS drugs then available to adults had been tested and approved for use in children. ''She was a mom, and she was determined to change the course of how this disease affected Jake,'' says Glaser's friend Susie Zeegen, a member of the founding trio. ''Millions of children have benefited as a result.''

Since then, the foundation has been credited with nearly wiping out pediatric AIDS in the USA, setting up hundreds of AIDS programs in developing nations and advocating for a requirement that drug firms test all new medicines in children (as the Senate voted to do last month).

''They were a major player in this. They said we've got to get this thing passed,'' says one of the bill's sponsors, Sen. Mike DeWine, R-Ohio.

But all that came later, long after three moms huddled over a kitchen table, plotting to save a little boy's life.

An ill-fated transfusion

The bleeding began six months after Glaser became pregnant with Ariel in 1981. Doctors at Cedars-Sinai Medical Center in Los Angeles found that the placenta had grown across Glaser's cervix, threatening her pregnancy.

She spent the next few months in bed. Ariel was born on Aug. 9, 1981. Then Glaser began bleeding again, and doctors began the fateful transfusions of seven pints of blood. Although no one could have known it at the time, the blood contained a virus, the source of a mysterious disease that was being diagnosed with distressing frequency in gay men.

Because her mother got the fatal transfusion after she was born, Ariel stands as one of the first tragic AIDS cases worldwide in which an infant was infected through her mother's breast milk.

On Oct. 25, 1984, Jake was born, and he contracted the virus from his unsuspecting mother during birth or while nursing.

The family moved to Miami temporarily in 1985 so that Paul could direct his first feature film, Band of the Hand. Ariel developed stomach cramps and a series of infections. Doctors began to suspect that she was infected with HIV.

In late May, every member of the family but Paul tested HIV-positive. Glaser could take the new AIDS drugs, but no drugs were available for Ariel. It would take several trips to Washington, including a meeting with President and Nancy Reagan, to obtain treatment for children.

It would come too late for Ariel.

A mother's determination

David Kessler, chancellor of the University of California-San Francisco, was commissioner of the Food and Drug Administration when Glaser made her first trips to Washington. Now chairman of the foundation's board, he vividly remembers his first meeting with Glaser.

''It was clear to me as a doctor that she was beginning to become sick,'' Kessler says. ''Her strength and respiratory status weren't great. But that didn't stop her. I've never seen anyone as focused: 'Why aren't you requiring companies to develop drugs for children with AIDS?' ''

A few months after Ariel's death in 1988, Glaser gathered her friends Susie Zeegen and Susan De Laurentis together to start the foundation, with a $500,000 donation from Paul's aunt Vera List. The three had Hollywood clout and were willing to use it, recruiting a Who's Who of entertainment and political personalities, including Alan Alda, Steven Spielberg, Tom Hanks and Sen. Orrin Hatch, R-Utah. The list grew by the dozens over the years.

Jake, a college student, is healthy and doing well, thanks to improved treatment, Zeegen says. ''He turned 19 in October. That's the success.'' (He prefers not to speak publicly about what he's been through, she says. ''It's hard enough being a teenager, much less a teenager whose family has been in the limelight.'')

The medicines that saved her son came too late for Elizabeth Glaser, who died in 1994.

Nov. 28, the anniversary of the Elizabeth Glaser Pediatric AIDS Foundation, falls coincidentally close to World AIDS Day observances today. Health officials credit the foundation's advocacy with:

* Prompting Congress last month to impose the pediatric rule requiring drug firms to test all new medicines in children.

* Prevention efforts that have cut the number of pediatric AIDS cases in the USA by 89% since 1992.

* A global ''Call to Action'' program to extend that achievement to 17 other countries, including India, South Africa and Russia.

* Direct funding for promising young HIV/AIDS researchers.

* The Glaser Pediatric Research Network, linking researchers at five top pediatric medical centers, to speed research into a range of childhood ailments. including osteoporosis, obesity and cancer.

* A busy social calendar of carnival-like fundraisers that unite celebrities and donors with kids and families who'll benefit both from the diversion of dunking booths staffed by favorite stars and advances in medical research. The foundation's assets now total about $32 million, with about $13 million earmarked for programs.

Cameron Siemers, 21, of Los Alamitos, Calif., says he's a perfect example of why the foundation's work is crucial. A hemophiliac, Siemers was infected at age 3 by a blood transfusion. He says he remembers vividly the day -- at age 8 -- that his mother gently broke the news that he had the virus that causes AIDS.

Today, after 10 rounds of drug cocktails, Siemers' latest medications are losing their effectiveness.

''A lot of people think there are all these medicines and they all work,'' he says. ''For me, I'm always waiting for the next medicine. I've been doing that forever. My whole life. And there are a lot of kids out there who need new medicines. A whole lot.''

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© Copyright 2003 USA TODAY, a division of Gannett Co. Inc.

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