LOVE IS THE CURE

Excerpted from the book LOVE IS THE CURE by Elton John
Copyright © 2012 by The Elton John AIDS Foundation
Reprinted with permission of Little, Brown and Company; all rights reserved

“As I said, I was appallingly absent from the early fight against AIDS. With large swaths of the government asleep at the switch, grassroots activists led the way. Every day Americans such as Larry Kramer, who simply would not go away, who would not shut up about the crisis in their communities. People like Elizabeth Glaser, the great advocate for pediatric AIDS research, whose determination forced people in power to pay attention to AIDS. But the most famous, and one of the very first to stand up for those living with HIV/AIDS, was my dear friend Elizabeth Taylor.”

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"Princess Diana, Elizabeth Taylor, Elizabeth Glaser, Mathilde Krim, Larry Kramer – these are my heroes, among many others. They worked hard and they accomplished much when it mattered most. I should have been by their side, following their example. Today, all I can do is follow in their footsteps. But back then, in the ‘80s, I could have made an impact early in the fight, just like them.”

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“The story of AIDS in Washington demonstrates what happens when we do not show compassion to those living with HIV/AIDS. But let me tell you another story, a story about the difference we can make when compassion drives our response to the AIDS epidemic.

In 1981, a woman named Elizabeth Glaser was nine months pregnant with her first child when she went into labor and began to hemorrhage badly. She lost so much blood that she had to be given multiple transfusions. Thankfully, her baby was delivered safely – a beautiful little girl whom Elizabeth and her husband, Paul, named Ariel.

Elizabeth, Paul, and Ariel were no ordinary family. Paul Michael Glaser was a famous actor, screenwriter, and director. At the time Ariel was born, he was known to millions as “Starsky,” a star of the immensely popular 1970s television show Starsky and Hutch. Elizabeth, an accomplished woman in her own right, was a director at the Los Angeles Children’s Museum. They were what you might call a power couple: well-connected and well-to-do. Despite Elizabeth’s life-threatening delivery, with the birth of Ariel, the Glasers had everything in the world going for them, and then some.

In 1985, when Ariel was four years old, she became very sick, and the doctors couldn’t understand why. As a precaution, she was tested for HIV and, to the horror of her parents, was positive. The Glasers learned that Elizabeth had contracted HIV during the blood transfusion she received. Elizabeth had passed the virus to her daughter while breast-feeding. Paul and Elizabeth had since had a baby boy, Jake; he had the virus as well, having contracted it from Elizabeth while in her womb.

The entire family, except for Paul, was HIV-positive.

Facing the toxic stigma that surrounded AIDS at the time, Elizabeth and Paul withdrew Ariel from nursery school. They withdrew as well. Despite their fame and status within Hollywood, the Glasers were forced to suffer privately with those closest to them, while their doctors did the best they could to care for what was then an entirely untreatable disease.

In 1987, however, the FDA had approved the first AIDS treatment, AZT, which was demonstrated to delay, if only by a short while, the onset of full-blown AIDS in those with HIV. But Elizabeth and Paul quickly discovered that the government had not approved AZT for use in children like Ariel and Jake. The reason, they learned, was the pediatric AIDS had barely registered on the radar of the medical community, pharmaceutical companies, and policymakers. At the time, there were roughly a thousand cases of pediatric AIDS, and they represented only 2 percent of the epidemic in the United States.

The bottom line was that the medical community wasn’t responding quickly enough, and Elizabeth and Paul’s little girl was dying.

In 1988, Ariel succumbed to AIDS. She was seven years old. Elizabeth was distraught not only at the death of her young daughter but also at the thought – the seeming certainty—of losing her baby boy, Jake, as well.

Ariel’s death transformed Elizabeth. She became a woman on a mission, and her single-minded focus was to bring attention and resources to bear on behalf of all HIV-positive children, including her son.  Before Ariel died, and then months after burying her first child, Elizabeth traveled to Washington to share her painful story with members of Congress. While Elizabeth and her family’s HIV-positive status was still unknown to the public and the press, she bravely confided in policymakers on Capitol Hill and implored them to help.

It worked. Congress soon voted to increase funding for pediatric AIDS research by $5 million. Elizabeth had made a real difference. But she didn’t stop there. Through a family connection, she arranged a meeting with President Ronald Regan and First Lady Nancy Reagan to share her story. They were moved, but little came of her White House visit; the research dollars just weren’t following fast enough or to the extent necessary. And so Elizabeth decided to take matters into her own hands. She started a pediatric AIDS foundation to raise the money herself. Elizabeth was soon directing millions of dollars from her foundation to critical research that would have a tremendous impact.

In the meantime, the National Enquirer had seized on the Glasers’ story. The tabloid published the details of their family tragedy for all of America to read, and they even went so far as to print photographs of little Ariel’s grave. Elizabeth was understandably furious. She was suddenly thrust into the national spotlight.

Yet, with extraordinary poise, Elizabeth used the media attention, unwanted as it had been, to raise awareness about AIDS and its impact on children and adults alike. Her public advocacy culminated in her impassioned speech at the Democratic National Convention in 1992. She delivered sharp words to a national audience about presidents Regan and Bush, criticizing them for talking about their concern for HIV/AIDS while doing far too little to actually fight the epidemic.

Thankfully, Elizabeth succeeded where those two presidents failed. In the early 1990s, due primarily to her lobbying, Congress dedicated tens of millions of dollars to pediatric AIDS research. Eventually, scientists discovered how to prevent the transmission of HIV from mother to child. By the mid-2000s, only around 100 children in the United States were born with HIV each year, down from a peak of some 900 cases in 1992.

Today, the battle against the epidemic of pediatric AIDS in America, and in much of the West, has largely been won. Very few American children contract HIV in utero, and practically none die of the disease.

Elizabeth didn’t live to see this victory come to pass; she died of AIDS in 1994. But her impact and legacy live on through the Elizabeth Glaser Pediatric AIDS Foundation, which, over the years, has had a profound global impact. Today, the foundation carries on with the help of Elizabeth’s son, Jake, now a young man who leads a vibrant, healthy life. Indeed, her work helped save his life.

But this work is far from over. While pediatric AIDS has been almost entirely extinguished in the United States and other developed countries, there are 3.4 million children infected globally and more than 1,000 new pediatric infections each day. Elizabeth’s tragedy continues to unfold for countless mothers and their children.

Today, the worldwide epidemic of pediatric AIDS is so much worse than Elizabeth could have ever imagined. And yet, thanks to her, we know exactly how to end it. Indeed, we know how to end the disease not only among children but among all people, all over the world: with relentless compassion.

At the Democratic convention in 1992 – which she described as the most important week of her life – Elizabeth told an audience of thousands at Madison Square Garden, and millions watching on television, how her AIDS-stricken daughter, Ariel, was the inspiration for her work:

'She taught me to live, when all I wanted to do was hate. She taught me to help others, when all I wanted to do was help myself. She taught me to be brave, when all I felt was fear.'

In her speech, Elizabeth called AIDS a 'crisis of caring.' She said that she was motivated not only by her own personal suffering, not only by her compassion for her children, but also by her empathy for gay people, poor people, people of color, and all who lived with the disease, and died from it, around the world.

Elizabeth’s story shows us the way forward. It also begs the question, if we can end AIDS for children in America, why can’t we end AIDS for everyone, everywhere?

The answer is that we can end AIDS. We simply haven’t. Not yet."

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