When Ariel Glaser died of AIDS at age 8 in 1988 no testing was being done on drugs to treat children with AIDS. None.
Today, there is an entire community of pediatric AIDS researchers.
Ariel’s mother, Elizabeth Glaser, wife of actor-director Paul Michael Glaser (“Starsky and Hutch”) received a tainted blood transfusion during Ariel’s difficult birth in 1981, and unwittingly transmitted HIV to her in breast-feeding. In 1984 son Jake was born. After Ariel became ill, blood tests revealed that she had AIDS and Jake and Elizabeth were HIV positive. Only Paul was spared.
After discovering that no one was working fast enough to save her children, Elizabeth, with two friends, started the Pediatric AIDS Foundation. With high-profile contacts but no experience, the women took their case to Washington. Unfortunately, the Reagan administration and the Bush one that followed were not interested.
“I now know what it feels like to live in a world that doesn’t care,” Glaser wrote in her 1991 book, In the Absence of Angels. The have-nots “are overwhelmingly black, Hispanic, and ignored [but] we live with the same fear, pain, loss and sadness every day.”
It was too late to save Ariel, who died a week after her eighth birthday.
“The mother in the South Bronx has to struggle with food and clothing and housing. Ari had food, clothes, and a house to live in, and it didn’t save her life,” Glaser said.
“What will save Jake and every other child with AIDS is a world community that feels not only compassion, but responsibility for those who have less and those who need help.”
Elizabeth Glaser succumbed to AIDS in 1994 but the foundation, which now bears her name, continues its work.
In 1988, there was no coordinated research on how AIDS affects children and little or no pharmaceutical testing for pediatric AIDS.
Since then, the Elizabeth Glaser Pediatric AIDS Foundation has raised more than $130 million and is now the leading national non-profit organization dedicated to identifying, funding and conducting critical pediatric AIDS research.
It is also funding programs in 13 developing nations to prevent mother-to-child transmission of HIV through simple, affordable preventive interventions.
This is particularly vital in areas such as sub-Saharan Africa, where up to 46 percent of pregnant women are infected with HIV and 25-35 percent of their children will be born infected.
Other parts of the world could soon be facing similar statistics if immediate action is not taken.
“The ugly truth,” Paul Glaser told a Senate hearing last year, “is that AIDS is a pandemic that is still in its early stages. Its future impact on the world isn’t even measurable.”
Unfortunately, “pharmaceutical companies have regarded children as representing too small a market share,” Glaser testified.
“It is far more profitable to create and sell to an adult market of symptoms rather than the long-range investment in preventative research and care.”
In 1997 Congress gave manufacturers an extra six months of exclusive sales if they test their drugs for children. In the prior seven years, drug manufacturers promised 70 pediatric studies, but conducted only 11. In less than three years after enactment of the incentives, they were already conducting more than 300.
“True, the advances we have seen have all been accomplished by ensuring an incentive for the drug companies,” Glaser said. “[T]hat is all part and parcel of … our system that stresses money and power.”
We’ll have to live with this, he said, “until people are prepared to acknowledge the federal government’s obligation to protect the common good.”
Critics of the incentives ask how much more profit the drug companies will require the next time around. The foundation supports a cap or “excess profits clause” for blockbuster drugs.
When it began, the foundation had hoped to be out of business in one year as the government took over responsibility for funding research. That still hasn’t happened.
Today, fewer children are being born with HIV and children with HIV infection are living longer and healthier lives. But, as Glaser said in 1991, “We are making progress in the war against AIDS, but it is far from over. It certainly isn’t won.”
Info on the Elizabeth Glaser Pediatric AIDS Foundation can be found at www.pedaids.org or call toll free at 888-499-HOPE (4673).
The author can be reached at crummel@pww.org
Comments