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The Face That Defined AIDS

Ryan White

Ryan WhiteLooking back at the 30-year history of HIV/AIDS, Ryan White would have to be considered one of the key historical figures.

Who was Ryan White and why was he so important? Longtime participants in the fight against HIV/AIDS can picture Ryan White’s face in an instant. But more than 20 years have passed since his death from an AIDS-related respiratory infection in April, 1990. Many of those who are just learning about HIV and AIDS might be too young to remember Ryan White, the namesake for the Ryan White Program services in Broward County and throughout the United States.

Ryan White was a middle school student in Kokomo, Indiana, who learned in December 1984 that he had been infected with HIV. White was a hemophiliac. His blood could not clot properly, meaning that he could experience severe bleeding from a simple cut or even a bruise. Hemophiliacs often require blood treatments and transfusions, and he had received HIV-contaminated blood from a routine blood treatment.

The general public had much less knowledge about HIV/AIDS in 1984, and there were many widespread misconceptions about how the virus could be transmitted. When Ryan was initially diagnosed, doctors estimated he had six months to live. But he was well enough to return to school in early 1985. Doctors said he presented no health threat to other students, and cleared the way for him to return to classes.

But both parents of other students, as well as teachers at his school, feared that the HIV virus could be easily transmitted like common colds or other viral infections. They did not understand that HIV could only be transmitted through an exchange of bodily fluids. So they heatedly objected to Ryan’s return to classes, fearing widespread exposure to what was then an untreatable fatal condition.

Ryan and his family, after being told he should not return to classes, put in a formal request for his return to classes. The request was rejected in June 1985 by the superintendent of schools for Ryan’s school district, leading to a legal battle that would last another eight months. He was finally allowed to return to school in April 1986.

The case drew extensive media attention and sparked a national discussion about safety issues and the ways the HIV virus could be transmitted. Ryan was often in the news, including appearances with celebrity advocates for better understanding of HIV, like the singers Elton John and Michael Jackson, and with the television talk show host Phil Donahue, who had a popular national show during the height of the controversy. Many other public figures offered their support for Ryan, ranging from actors and political figures to Indiana University basketball coach Bobby Knight, one of the highest-profile public figures in Ryan’s home state.

Ryan White’s health far exceeded the predictions doctors made after his initial diagnosis, and remained in the public eye throughout his teen years. He appeared before President Ronald Reagan’s AIDS Commission in 1988. There was a made-for-television movie, “The Ryan White Story,” that aired in 1989.

But by early 1990, Ryan’s health had begun to deteriorate. He was admitted to the hospital, with his condition receiving national attention. He was visited by public figures, including one of his staunchest advocates, Elton John. Ryan died in April; just months shy of his high school graduation.

His funeral was shown on national television, and was attended by some 1,500 people, including then-first lady Barbara Bush and  Ryan’s many celebrity supporters.

In August 1990, just months after his death, Congress approved the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, the initial legislation leading to the creation of the Ryan White Program and other services for people living with HIV/AIDS.

Ryan had become the face of an innocent young man struggling to overcome both the medical and social challenges related to HIV/AIDS. Ryan’s mom, Jeanne White-Ginder remains active as an advocate. She has established the Ryan White Foundation, a national, non- profit organization to increase awareness of personal family and community issues related to AIDS, with particular assistance to hemophiliacs.

Pedro Zamora

Pedro ZamoraDuring the first half of the 1990s, a young South Florida-raised AIDS educator named Pedro Zamora brought a new level of understanding about the disease to the country as a member of the groundbreaking and popular MTV television reality series “The Real World: San Francisco.”
Zamora was born in Cuba and came to the U.S. as part of the historic Mariel Boat Lift in 1980, when he was eight. The family settled in Hialeah, where he was a popular honor student and captain of the cross-country team at Hialeah High School, voted Most Intellectual and Most All-Around.

During his junior year in high school, Zamora, who was openly gay, learned after donating blood for a Red Cross blood drive that he was HIV positive. After graduating from high school in1990, he chose to forego college and become an AIDS educator. This was in the years immediately before drug therapies had advanced to arrest the HIV virus, so Zamora calculated that he had a relatively short life expectancy.

Zamora spoke at schools, churches and any groups with an interest in learning about AIDS. He traveled extensively in that role, and was active as a board member for various AIDS organizations.

When he learned in 1993 that MTV was getting ready to select a cast for the new season of “The Real World,” which would be based in San Francisco, he sent an audition tape and was eventually selected. The other cast members were told one of the people in the house was HIV-positive, although the person was not identified.

During the taping, Zamora soon told the others in the house that he had AIDS and that he was an AIDS educator. Some of the people living in the house would go with him when he spoke at schools, and they were generally supportive. But even his friends among the cast had some fears and concerns that had to be overcome. One cast member sometimes mocked Zamora, nearly causing Zamora to leave the house. Instead, the other cast members voted the tormentor out of the house.

With the high profile of the program, and with Zamora’s situation being one of the most compelling story lines ever, he had become one of the people who, like Ryan White, helped put a face on AIDS and improve overall understanding. His discussions with other reality cast members were informative and understandable for the show’s viewers. He also attracted considerable notice beyond the standard viewing audience.

Zamora became steadily weaker as the season progressed, and at times he was unable to participate in cast activities. The cast had moved out of the house by the time the editing was completed and the shows were being aired in June 1994. Meanwhile, in August, Zamora was hospitalized in New York and diagnosed with toxoplasmosis, a rare AIDS-related condition that causes brain lesions and limits speech.

In early September, he was moved back to South Florida where he could be closer to his family. While he was hospitalized in Miami that fall, during the time “Real World” was attracting national attention, then- President Bill Clinton called to thank Zamora for what he was doing to increase understanding about AIDS.

On November 11, 1994, the day after the final episode of “Real World: San Francisco” aired, Zamora died. He was 22.

The interaction between Zamora and the rest of the cast helped make “Real World” one of the most notable programs on television. Time magazine ranked the confrontation between Zamora and adversarial cast mate David Rainey as the number seven-ranked event in its list of the most epic moments in reality television history.

He has since been memorialized with his name on funds, foundations, a clinic and even a street in Miami. An award-winning book and an award-winning film about Zamora have also helped establish his legacy in the history of HIV/AIDS.

Rae Lewis-Thornton
Rae Lewis ThorntonThe December 1994 cover of Essence magazine featured a picture of Rae Lewis-Thornton with the memorable large-type quote “I’m young, I’m educated, I’m drug free, and I’m dying of AIDS.”

It was the first time a major publication had done a cover story on a black woman and her experience living with AIDS. Since then, Lewis-Thornton, who was a rising young force in politics when she discovered after a 1986 blood donation that she was HIV positive, has been a leading voice in AIDS education, especially among women and the black community. She has been featured on the “Oprah Winfrey Show”, and O-the Oprah magazine, in the magazines Glamour, Jet, Ebony, Emerge, and on television specials on “Dateline”, “CNN”, “Nightline”, Black Entertainment Television, the Montel Williams Show, and in articles in numerous major newspapers. Although she maintains a major presence as an AIDS spokesperson to this day, during the 1990s she was among a handful of pioneers who came forward to put a human face on HIV/AIDS.

Lewis-Thornton was already a noteworthy personality even before she learned she was HIV positive. She had been the national youth director for Jesse Jackson’s 1984 presidential campaign. Her separate political activities included serving as Jackson’s youth director again in 1988, and as the 1988 Illinois state youth coordinator for the Dukakis presidential campaign, and as senatorial campaign advance coordinator for Senator Carol Mosley Braun’s 1992 campaign.
She stepped away from full-time political work for health reasons in 1994, but has continued as a leading voice for HIV/AIDS issues. In addition to her traditional media and speaking engagements, Lewis-Thornton also continues her public advocacy and education work with her website and blog at raelewisthornton.com