Personal Reflections on the 25th Anniversary of the Death of Ryan White
By Jeff Cornett RN MSN, Director of Training, Research, & Advocacy
On April 8, 1990, Ryan White, an 18-year-old with severe factor VIII deficiency, died from AIDS. He was neither the first person with hemophilia to die after receiving factor contaminated with HIV, nor the last. He was certainly the most famous, a distinction he did not seek. Ryan received national attention in 1985, when he had to sue to attend the Indiana middle school that had barred him because he had AIDS. He and his family endured much abuse, eventually moving to another town after Ryan finished the eighth grade. Befriended by Elton John, Ryan became, for most of America, the face of a young person with AIDS and he spoke to many groups and influential people about the disease.
I believe families with hemophilia in the 1980s viewed Ryan White’s experience differently than the mainstream. They were not hearing for the first time about HIV or contaminated blood products. It was not a learning experience. They did not need to become more compassionate. What they were seeing in Ryan’s story was how they might be treated if others found out about their HIV.
I don’t have hemophilia or AIDS. However, my connection with this story goes back to its beginning. In 1985, I was hired by the Georgia Department of Human Resources to work in its first AIDS office, planning education and prevention activities throughout the state. Because I was a nurse, AID Atlanta asked me to be on its Practical Support Team of volunteer health professionals who could provide home care to people who had both AIDS and other complex health problems like hemophilia. When the CDC was reporting only five “official” AIDS cases among people with hemophilia, I had personally provided care for three of them. In 1990, six months after Ryan White’s death, I was hired by Hemophilia of Georgia to work with adolescent boys with hemophilia and HIV.
I don’t know if people who did not go through those years can imagine the horrors experienced by the hemophilia community. First came the knowledge that the majority of people who used factor concentrate had HIV-a virus that could progress to a disease for which we lacked effective treatment. Death from AIDS was agonizing and horrible. Because of the inheritance of hemophilia, multiple family members could be infected. Understandably, many men with hemophilia went into denial, some refusing to be tested for HIV, even five years after the test became available. Support groups for men with hemophilia and HIV had no attendees because no men wanted to talk about it. There was a group, however, that was desperate to talk and get support: their mothers, wives, and girlfriends.
At first, many of these women believed that since their loved ones had not gotten HIV through sex or illegal drug use, they would be viewed as “innocent victims” and not suffer the discrimination that was affecting other AIDS groups. They quickly found that fear and ignorance didn’t care how you got HIV. Often this realization was most heartbreaking when families turned to their churches for help and were not just rejected, but told to leave the church and not come back. Fortunately, these women pulled together to support one another. Their groups, called WONN, the Women’s Outreach Network of the NHF, met for education and support and were well-attended. I’ll never forget when a Hemophilia of Georgia social worker came into work one morning and described an exchange that had taken place at a WONN support group the night before. A new woman in the group began talking about how her boyfriend hadn’t done anything wrong and didn’t deserve to get AIDS like the homosexuals and the drug users. One of the mothers in the group told her, “You’re new and you’ll learn. No one deserves to get this disease.”
As the general public was learning about the connection between hemophilia and AIDS, the hemophilia community in Georgia responded by becoming secretive. Not only did you have to hide your HIV, you had to prevent as many people as possible from finding out about your bleeding disorder. Hemophilia of Georgia stopped putting the organization’s name on envelopes so no one would know you were getting mail from us. Patients insisted that the organization keep its distance from any event that might remind the public of a link between hemophilia and AIDS. These fears were not unfounded. We had school children, teachers, bakers, dentists, and others with hemophilia and HIV who would suffer if their diagnosis became known. Legislators in the Georgia General Assembly talked about quarantining or tattooing people with AIDS. In the midst of all of this, people with hemophilia could see what was happening to Ryan White’s family and later, the Ray family in Florida.
People with hemophilia could also see something else in Ryan White’s story: courage in action. Ryan and his mother were outspoken fighters. We had some of those in Georgia too! One was Lee Gaudry, a Savannah man with hemophilia, and his wife Alison. In the late 1980s, Georgia had an AIDS Task Force that was supposed to guide our state’s response to the disease. It didn’t include a single person with AIDS. Lee agreed to serve in that position, even though it meant that his diagnosis would become public knowledge. He and Alison gave an interview to the Atlanta paper where Lee made a prediction that has happily come true: “I fully expect that the drugs they’re testing now and in the near future will make AIDS a disease that you live with. I’m used to living with a deadly disease. I’ve been living with one all my life.” Sadly, Lee passed away in November 1990, but not before helping educate Georgians about the unique issues faced by a heterosexual man with AIDS.
Another courageous Georgia family was the Proctors. Nancy and Ken Proctor had two sons with hemophilia, Dan and Ron, both of whom developed AIDS. Ron and his wife were driving forces in organizing both Georgians with hemophilia and HIV and the women who loved them. After Dan and Ron died, Nancy and Ken told their story to the newspaper of the Catholic Archdiocese of Atlanta. They openly shared their experience raising two boys with hemophilia, learning they had HIV, and caring for them throughout their illness. Nancy and Ken’s words, specifically relating their ordeal to their religious faith, had a strong impact. I knew Ron well, but had never met Dan. In the article, Nancy described how Dan decided to tell his classmates at St. Pius X High School in Atlanta that he had AIDS: “I admired him beyond words for what he was doing, but I warned him that once he told his classmates, they may not want to be around him because they might not completely understand the medical facts. He was carrying a fatal virus that people were afraid they could get through any sort of interaction. But he told me this was something he had to do. . . . I was so proud that my son had the guts and fortitude to stand up and speak the truth without bitterness and without anger.”
I knew another Georgian whose words and actions, just like those of Ryan White, continue to resonate long after his death. Because hemophilia is such a rare disorder, it is unusual when someone tells me that they know a person with it. When they do, the name they mention most often is that of Jay Minish. Jay was just 24 years old when he died from AIDS, but he touched many people through his willingness to share his story. He found out he had HIV when he was in the seventh grade and eventually became a speaker for AID Atlanta. He was especially popular with student groups. In Jay’s obituary, the AID Atlanta coordinator described how Jay “was a very powerful speaker. He was young and the students could identify with him. He was also very brave about speaking about HIV as a young straight man.” Once, when I was in Washington seeking help on a bleeding disorder issue, a staff person in a congressman’s office listened to me present the facts on the issue. I didn’t think we were getting through. When I finished, the young woman said, “I’ll help you on this. I knew a guy with hemophilia named Jay Minish and he was an incredible person.”
Now, when you remember Ryan White and Ricky Ray, I hope you’ll also join me in thinking about those who didn’t receive national attention, but who had the courage to say, “I have hemophilia and I have HIV” and helped to create a Georgia that is more understanding and less fearful.