No Kidding Around

Jim Jennings, the New COO Behind the Elizabeth Glaser Pediatric AIDS Foundation, Advocates for Children Living with HIV/AIDS
by Dale Reynolds

When Elizabeth Glaser, the wife of television star and director Paul Michael Glaser, passed HIV on to her just-born infant, Ariel, through breastfeeding, she inadvertently handed down a death sentence to her, finally losing their beloved daughter seven years later. That was in 1988 and the couple did more than just privately mourn their loss. Because Elizabeth had contracted the disease from a blood transfusion during Ariel’s difficult birth, there was an impetus to create an important foundation that would deal directly with children and AIDS, eventually called the Elizabeth Glaser Pediatric AIDS Foundation, in 1988.

Now, the foundation has recently tapped Virginia native Jim Jennings, fifty-eight, to be its Chief Operations Officer. He came to the job with some elaborate qualifications, first of which being that he is the survivor of a relationship that ended when his lover, Donald Mumma, a forty-year-old from Colorado, succumbed from the effects of HIV/AIDS early in the epidemic, almost twenty years ago. “It made an activist out of me, just trying to get information about the disease that the government didn’t want to know about,” Jennings says.

His second qualification for the job came from his thirty years in public affairs, mainly in international public relations in Washington, D.C., and New York City, but also from his stint within the pre-AIDS Nixon Administration on a White House Commission, where he worked on issues, mainly for public policy changes.

His work with the influential PR firm, Hill & Knowlton, from 1986--2001, allowed him firsthand knowledge of the progress in HIV/AIDS immunology and virology. “It definitely helped me understand the crucial audiences and the issues we had to deal with, practically starting from scratch as everyone was,” he says.

He learned enough to know that the Elizabeth Glaser Pediatric AIDS Foundation (PAF) was the strongest proponent for more research, money, and social help for children, often unseen in their suffering, a demographic that had been mostly ignored in the early fight against (and ongoing denials of) HIV/AIDS. “There was no money from the National Institute of Health for these kids, in large part because there wasn't any focused voice in favor of it,” he says. “That was true for the adult side as well, until gay men and others began to publicly and politically lobby for funding.”

He is deeply aware of the legacy he is joining: Glaser and two other friends “were the impetus behind the founding of the organization—three moms who were in a desperate attempt to save children. They wouldn't take ‘no’ for an answer,” he says. “I know it was this combination of the heartfelt issues surrounding children and the need to do something fast and significant—and to not accept barriers—which forged the ethos behind the organization. ‘If we don’t, who will?’ became the philosophy.”

So, at that time, two decades ago, why was it so difficult to conclude that people in danger needed help from their government? Jennings devolves into several replies based on his long professional life: “First, the activist side of me answers that, until any power structure feels the brunt of the disease themselves by taking heat from a political constituency, it’s human nature not to take it as seriously. And, add to that a lot of ingrained homophobia and fear—well, it takes time. Second, with a lack of clarity on how it was transmitted, a ‘not-in-my-backyard’ bunker mentality, meant that we have had to build a major movement toward the studying of the disease—even today there’s a galling amount of misunderstanding about the disease. Thirdly, America has always had difficulty dealing with medical issues that are in the sexual context. How many women understand that cervical cancer is likely spread by a sexually-transmitted virus? And there’s a ton of non-information on how drugs actually work on children: Seventy percent of the drugs used on kids haven't been tested on any children first, leaving it to massive guesswork on the part of pediatricians, since there’s a seriously limited number of clinical trials.”

That is the primary focus of PAF’s work. One of its key charges is to try to preserve the “Pediatric Rule”: a 1998 government-mandated decree that clinical trials of all new drugs must be tested on kids. Says Jennings: “When Viramune was approved by an advisory committee, they demanded that new tests involve children, a first for HIV drugs. There’s a huge difference, you know, between an eighteen-month-old infant and a six-year-old child in metabolizing HIV meds. The dosage and side effects vary. We feel we’re on the verge of a new advent in medicine, the benefits of the new science of genomics, with new agents that need to be looked at in the pediatric setting.”

The other shoe that needed dropping was how public policy unfolded with increased media attention. “Until recently, no one understood how broad and deep the epidemic went into the United States. If you want something changed in society, you need a voice that the folks in charge will listen to and that demands organization and money,” notes Jennings. “It took time for those impetuses to occur so that the government would have to listen. Americans have seen so many pictures of famine and human devastation in Africa, it’s difficult to pay further attention. But, we’re beginning to understand that this disease will, if not checked, have an enormous impact on the future of our children and grandchildren.”

After all, it was Bill Clinton—and not Ronald Reagan—who declared HIV a threat to the future security of the U.S. and its interests abroad. President Bush’s recent State of the Union declaration of funding support for the fight feeds the optimistic side of Jennings: “Congress will support the President with the funding. There are points in the evolution of this disease where timing has been everything. The political leadership on both sides of the aisle and at the White House shows us that enough critical mass has formed that if the money comes along, then we can do something fierce to help fight the disease. It isn’t easy—not a cakewalk at all—but with this confluence of public opinion, politics, and money, and with the Glaser Foundation on the frontline as the point of the spear, it’s very heartening.”
The Elizabeth Glaser Pediatric AIDS Foundation has 250 sites in seventeen countries now. For Jennings, it is this work they are conducting in sub-Saharan Africa that is putting into place treatments as a beachhead in the war against pediatric infections. “Normandy has occurred in this fight,” he says. “Babies are being born there without the disease, mothers are living longer, and families are stabilizing.”
Dale Reynolds is formerly West Coast Editor of A&U. He is currently a freelance writer on entertainment themes, and can usually be spotted at www.zap2it.com.

August 2003