THE BLOG
12/28/2015 12:55 pm ET Updated Dec 28, 2016

What Ryan White Teaches Us, 25 Years After His Death

December 1 is celebrated as World AIDS Day. It is quickly followed by the flurry of holiday activities surrounding December 25 and it is easy to miss any connections between December 1 and Christmas. This year, I thought about how two children, separated by two millennia, proved to be so influential in bringing together so many disparate peoples. I am, of course, talking about the Christ child and someone closer to our lifetime, namely, a teenager named Ryan White, a crusader for AIDS before his untimely death 25 years ago.

So who was Ryan White? I was a medical student in the mid-1980s when Ryan's name became synonymous with the AIDS epidemic. As a physician who currently provides care to patients living with HIV/AIDS at a clinic on the Yale University campus, I had the recent opportunity to attend a talk given by Jeanne White-Ginder, the mother of Ryan White. The talk was sponsored by the United Pride Alliance, a student-led group for LGBTQ at nearby Gateway Community College. It was a cold, rainy weeknight, yet the room was full. We were a mixed bunch: young and old, black and white and Hispanic, men and women, straight and gay and transgender, academics and community health workers. Many of the younger people in the room had never heard of Ryan White.

Mrs. White-Ginder is now in her 60s and had a visible limp as she made her way onstage to an armchair from which she began her talk. Though I am sure she had given this talk many times before, her delivery was spontaneous and captivating, straightforward and unassuming. Over the next 90 minutes, with no notes, she shared the story of her son, a hemophiliac, who in 1984, at the age of 13, was diagnosed with AIDS. He had a death sentence from the beginning since in those days there were no available treatments. Yet, Ryan managed to live an additional five years. During that turbulent time, when fear of AIDS crippled his Indiana small town of Kokomo, Ryan took truth to power. Ryan was banned from attending school and he took his case to court. In the course of this very public battle, he became the poster child for AIDS. He achieved celebrity status as he raised awareness together with stars such as Elton John, Michael Jackson, and Elizabeth Taylor. Because the gay community, which was hardest hit by AIDS, adopted him as a spokesperson, he was further vilified in his town. Through it all, his message was always that everyone battling this disease, gay or straight, white or black, rich or poor, was in it together. His mother noted that Ryan used to say, "Let's make this a disease and not a dirty word." He was poised beyond his years and film clips shown by his mother revealed how he possessed a disarming manner that pierced through barriers and united people in a way that only childlike innocence could.

Ryan White died in 1990. He was never able to take advantage of the miracles of modern HIV medications. These days, a person diagnosed with HIV early in the disease leads nearly a normal life span if started on antiretroviral medications early. There are now several one pill once a day options with excellent safety profiles. The AIDS community has been mentioning the "cure" word, both in terms of individual health and for halting the worldwide epidemic. Had Ryan lived, he would have seen that the Federal CARE Act passed in 1990 and named in his honor, has improved the lives of millions of people living with this disease. In his own personal triumph, Ryan eventually won his court battle and returned to school, but his family decided to move to another town, because of the ongoing intolerance of his hometown.

Fast-forward 25 years, back to the lecture room at Gateway Community College. All of us in that room were transfixed by Jeanne White-Ginder's storytelling and many soft sobs were heard and felt. It was a "moment" shared by everyone in the room. During the question and answer period, a young woman from New Haven who herself had many family members who were affected by AIDS, stated that "Many people talk about a cure for AIDS; however, even if we have a medical cure, the societal effects still need to be addressed."

If Ryan White were still alive, he would have seen that his legacy and example was really about destigmatizing AIDS by bringing people together who would not ordinarily have been in the same room. This was as true in his day as it is now, where his mother took his message to a roomful of people who might not have been assembled except for this occasion.

On the adjacent New Haven campus, Yale students protested about lack of diversity and demanded that senior administrators bring forth changes so that Yale could become a more inclusive university. The President at Yale announced that $50M would be spent to promote diversity on campus. There are calls for setting a tone of urgency for targeting faculty diversity with the premise that "diversity and excellence are complementary pursuits." This is a complex transformation that will require innovative approaches. This is a hopeful start. How to bring diverse people in the same room with authentic dialogue to bridge differences was what Ryan White was all about. His message, as conveyed by his mother, still speaks to a larger world, 25 years later.