Jeanne White will never forget that heady day in 1991 when, after clearing out her office from its cramped quarters in the basement of her Cicero, Ind., home, she crossed the threshold of an elegant business suite in downtown Indianapolis. Within were two full-time employees, 10 volunteers, an executive director—even some new, donated furniture. “My hopes were flying then,” she says wistfully. “We were going to become a national organization focusing on the education and prevention of AIDS.”
Today, that dream is gone. On a warm late-winter afternoon in her yellow house overlooking Cicero’s Morse Lake, she and her surviving child, Andrea, 26, are packing up the CDs, books and boxes that constitute the last vestiges of the Ryan White Foundation.
In the late 1980s, the story of Ryan White, a bright-eyed young hemophiliac who contracted AIDS through tainted blood products and became the victim of vicious persecution in his hometown of Koko-mo, Ind., served as a heartbreaking wake-up call to the nation. His plight also attracted the attention of celebrities, including Michael Jackson, who bought Ryan a 1989 red Mustang and entertained him at his Neverland ranch, and Elton John, a friend who loaned Jeanne the down payment for her house in Cicero. When Ryan died on April 8, 1990, at age 18, the foundation that bore his name became one of the first galvanizing forces in the fight against AIDS.
But AIDS donations nationwide have declined 21 percent in the past two years, and the White Foundation has seen its contributions dwindle from a high of $300,000 in 1997 to just $100,000 last year. Jeanne will soon merge what remains of her foundation into AIDS Action, becoming a staff spokeswoman for the $2.2 million umbrella organization, which numbers among its 3,200 members groups such as Gay Men’s Health Crisis and AIDS Project Los Angeles.
The White Foundation’s demise may be partly attributable to its location in Indianapolis, where AIDS incidence is lower than in many other major cities. But other factors were also at work. “There was a notion that we were being bankrolled by all these famous people Ryan knew before he passed away,” says former board member Kathy Harrison. “But they were Ryan’s friends, not the foundation’s.”
Not that celebrities had lost interest in the Whites or in Jeanne’s work. Jackson recently bought from the foundation all 2,500 remaindered copies of Ryan White: My Own Story for $2.50 each, and John; helped pay for Andrea’s college education. But they never provided the bulk of the organization’s funding, directing much of their financial support instead to larger, more established groups such as John’s own Elton John AIDS Foundation, which has contributed nearly $22 million to various AIDS causes worldwide. “The world can’t support all these not-for-profits,” says Jeanne White, Mow 52. But as much as she laments the loss of her own organization, she is more distressed by the general decline in AIDS support. “A lot of groups are having a hard time because the consensus is that AIDS is over, that we have a good treatment,” she says. “People are looking elsewhere to send their dollars.”
In fact, though various treatments such as protease inhibitors have proved effective at arresting and sometimes even reversing the devastation caused by AIDS, the number of cases in the U.S. rose from 155,619 at the time of Ryan’s death to 781,344 in 1999. Almost more disturbing is the fact that for the last five years fully half of the approximately 55,000 new cases of HIV infection reported annually—most contracted sexually—involve people under the age of 25, suggesting that AIDS is more than ever a disease of the young and that AIDS awareness programs are failing to reach one of their most important target audiences. ” [Young people] believe, ‘I am invincible and will never die,’ ” says former talk show host Phil Donahue, who helped start Ryan’s foundation and was one of its major supporters up until the end. “But this is a disaster, and it is getting worse.”
No one understands that better than Doug Stubblefield, 25, of San Francisco, who was diagnosed with AIDS nearly two years ago. Stubble-field admits that he failed to practice safe sex, even after an uncle who was gay died of the disease. “It was a rough couple of years after I came out, and if I had a role model or someone I could turn to, it would have made all the difference in the world,” says Stubble-field, who now volunteers for Bay Area Young Positives, an AIDS-awareness group. “But I do think I’ve changed the direction of a few friends who were being promiscuous. They saw that what happened to me could easily happen to them.”
Terrence Owens, 22, of Washington, D.C., became infected while a college student in Virginia. “A lot of people still think AIDS is an older, gay man’s disease,” says Owens, a youth coordinator for a gay service group focusing on the African-American community. “But kids are extremely at risk because of what they’re doing.” And Melissa Milne, 18, a senior at California’s Las Lomas High School who contracted the disease through a blood transfusion as a newborn, often speaks to youngsters about taking safe-sex precautions, even giving them a taste of her medication (“they think it’s disgusting”) as a warning. “A lot of kids have sex because they don’t believe it can happen to them,” she says.
For White, that kind of youthful nonchalance signals an imperative. Though part of her longs to move to Florida with her husband, Roy Ginder, 45—an auto-body repairman she married in 1992—to finish the renovation of their three-bedroom retirement home, she is resolved to spend many a long day around the country and on Capitol Hill. There, in her new capacity as an AIDS Action spokeswoman, she will lobby for a $125 million increase in funding for next year over the $1.6 billion appropriation for the Ryan White Care Act, a bill that provides support and treatment for thousands of AIDS patients nationwide and that was first passed just four months after her son’s death. “If we relax on this disease, there is going to be a volcano of infections,” she says. “We can’t say that our kids are not important or that there’s no need. It has been 10 years since Ryan died. We can’t stop now.”
Giovanna Breu in Chicago