The funeral of Ryan White, who died last month of complications from AIDS, was a media event. The Cable News Network provided live coverage, and People magazine a cover story. Attending Ryan’s funeral at Indianapolis’s Second Presbyterian Church were such sports and entertainment celebrities as Michael Jackson, Howie Long, and Phil Donahue. Elton John sang an original song for Ryan. First Lady Barbara Bush was there. And former President Ronald Reagan, in a column about Ryan’s death published in The Washington Post, wrote that “our lives are better for having known Ryan.”
Everyone loved Ryan; the 18-year-old said to have “put a face on AIDS” died a hero. Ryan has been called the “AIDS-education spokesman for America,” and certainly, he humanized the disease for many people.
But the media glitz has blinded many observers to two important facts. First, Ryan was not a typical person with AIDS. Second, he was not an appropriate spokesman to carry the AIDS-education message to the “third wave” of those at risk for the disease: teenagers who are sexually active or who share needles while injecting drugs. Often, these are people of color; many are poor and live in the inner cities, and, increasingly, they are female. (The first two “waves” of the epidemic were gay men and intravenous drug users.)
To be sure, Ryan was enormously influential in enabling people to talk about AIDS and those who suffer from it. Two years ago, I was invited to testify before the Presidential Commission on the Human Immunodeficiency Virus. On the same day, Ryan also testified. As I listened to Ryan, I was amazed at the incongruity of a frail, diminutive 16-year-old boy speaking with a voice of wisdom and compassion. His innocence, honesty, and awkward grace won over the commission and the entire audience.
When asked about an absolute guarantee against casual-contact transmission of AIDS, Ryan replied, “There are no 100 percent guarantees in life.” Asked if he or his family felt hatred for the people who convinced them to move from Kokomo to Cicero, Ind., he said, “No, because we realized they were victims of their own ignorance.” He talked about how AIDS could destroy a family, but how his mom “taught us to keep going, don’t give up, be proud of who you are, and never feel sorry for yourself.”
The nation witnessed the power of education as Cicero prepared for Ryan by teaching its school staff, students, and community about AIDS. The results were compelling. The boy who had had to be taught via a computer at home for fear of casual contact in Kokomo was not shunned but embraced on his first day of school in Cicero. In fact, Ryan closed his testimony two years ago by saying, “I believe in myself as I look forward to graduating from Hamilton Heights High School in 1991. Hamilton Heights High School is proof that AIDS education in schools works.”
But with great respect for Ryan and what he did for AIDS education, we must remember the facts about AIDS:
On the day of Ryan’s death, approximately 56 other people died from AIDS (average deaths per day in the United States in 1989). Over 78,000 people in this country have died from the disease.
Ryan became infected with the AIDS virus through a contaminated clotting-factor treatment for his hemophilia. Hemophilia and coagulation disorders account for only 1 percent of those with AIDS.
Fewer than 1 percent of all AIDS cases are school-aged children.
More than 94 percent of AIDS cases are linked to sexual (mainly homosexual) or drug-related behaviors.
AIDS accounts for only a small portion of the infection caused by H.I.V. While over 125,000 people in the United States have been diagnosed with AIDS, there are probably at least 1 million with H.I.V.
Since most of those with H.I.V.--probably 90 percent or more--have not yet developed AIDS, these infections are an invisible problem. Because they show no symptoms, even those who have the virus may not know they are infected. But they are infectious to others through sexual intercourse or sharing needles in intravenous drug use. Infants born to H.I.V.-infected parents can become infected even if the parents do not have AIDS yet.
In speaking with young people across the country, I have found that many teenagers who are sexually active or share drug needles have never heard of Ryan White, much less his message about AIDS.
Recently, one student told me, “Ryan didn’t get AIDS the ‘real’ way most people get it, you know, sex and drugs.” Many say, “If H.I.V. is spread by sex and drugs, then show us some teenagers who became infected that way.” But because of the long incubation period, most young people will probably never know another adolescent infected with AIDS from drug use or sexual behaviors.
Does fear about the spread of hiv in teenagers merely reflect a “disease of the moment” syndrome among educators? In fact, many studies indicate that students are at risk for H.I.V. and call for immediate educational efforts.
A 1988 study of behavior among high-school students conducted by the Centers for Disease Control reported the following variable rates in four sites:
Intravenous drug use: 2.8 percent to 6.3 percent said they had injected cocaine, heroin, or other illegal drugs.
Sexual intercourse: 28.6 percent to 76.4 percent reported having had sex at least once, and 15.1 percent to 42.6 percent had had three or more sex partners.
The C.D.C. estimates that 1 out of 7, or 2.5 million young people between the ages of 15 and 19 will contract a sexually transmitted disease this year. Unfortunately, other s.t.d.s are seldom given the emphasis they need in educational programs as possible co-factors for H.I.V. infections.
Last September, Antonia C. Novello, who has since become U.S. Surgeon General, reported that AIDS is now the seventh leading cause of death in the 15-to-24-year-old age group. She also noted that a significant number of those diagnosed with the disease are in the 20-to-29-year-old age group--approximately 20 percent, or over 25,000 people. Since H.I.V. may have up to a 10-year incubation period, some of these may have acquired the virus during adolescence. Dr. Novello called for aggressive education in schools and communities for hard-to-reach youths, such as dropouts, runaways, and homeless teenagers.
An article in the April 18 issue of the Journal of the American Medical Association reported that the AIDS virus is “not rare” in teenagers. The authors found that approximately 1 in 3,000 teenagers applying for military service between 1985 and 1989 tested positive for the virus (1.06 per 1,000 for blacks, 0.18 per 1,000 for whites, and 0.31 per 1,000 for Hispanics). The article also noted that, for various reasons, the prevalence of H.I.V. may be substantially greater than 1 in 3,000 for teenagers in the civilian population. Surprisingly, where the male-to-female ratio for H.I.V. prevalence among adults is 9.3 to 1, it was 1 to 1 in this study of teenagers (0.35 per 1,000 teenage males, 0.32 per 1,000 teenage females). The researchers concluded that “H.I.V. is a real and immediate threat for teenagers throughout the United States,” and suggested that “intense yet appropriate targeted educational efforts may play an important role in limiting H.I.V. transmission among teenagers.”
Ryan White lived a courageous life fighting the ignorance and discrimination surrounding AIDS; his legacy for AIDS education will be rich for many. He reaped love, support, compassion, and understanding that most people with AIDS never experience. And he died without the stigma that surrounds most of those who suffer from the disease.
But for many teenagers who are at risk, yet refuse to believe that they are, his message is not real. The question to ask is: Who will be the spokesman for the new groups at risk for H.I.V. infections? Who will help combat the ignorance, fear, denial, and complacency among them? Who will speak to those who have yet to hear the legacy of Ryan White?
A version of this article appeared in the May 23, 1990 edition of Education Week