By Maureen Gilmer, IU Health senior writer, firstname.lastname@example.org
Nearly 33 years after his death, Ryan White continues to remind those who knew him how to live – with dignity, compassion and grace.
That includes the team at Riley Children’s Health, in whom Ryan and his family entrusted his care after he was diagnosed with HIV/AIDS when he was just 13.
“I will only go to Riley,” the teen told his mom as he fought the disease that weakened his immune system. “Take me to Riley.”
On Tuesday, a sculpture of the smiling young man created by artist Bill Mack was reinstalled near the original entrance to Riley. It had been in storage while the hospital space was redesigned to accommodate Riley’s new Maternity Tower.
On hand for the rededication were several members of the Ryan White Center for Pediatric Infectious Disease and Global Health at Riley Children’s Health, as well as Riley President Gil Peri and Dr. Elaine Cox, Riley’s chief physician executive and former longtime director of the Ryan White Center.
“Ryan White humanized HIV and AIDS … at a time when those with the disease were shunned by many who didn’t know enough about (it),” Peri told the assembled group before the sculpture was unveiled. “He’s been a beacon of hope for our community and throughout the world.”
It was Dr. Martin Kleiman, then a world-renowned pediatric infectious disease specialist at Riley, who told Ryan he had the disease in 1984. Little was known about AIDS then except that it was most certainly a death sentence.
The Riley physician told the Indiana boy he likely had six months to live. But Ryan would go on to live five more years, and in that time, he changed the face of a disease that had been racing across the world.
At the time, AIDS was poorly understood by the public, despite assurances that it was not an airborne disease but spread solely through body fluids.
While it struck members of the gay community the hardest, it could also be acquired through blood transfusions and intravenous drug use. Ryan contracted the disease through a blood transfusion.
The teen became one of the most well-known faces of AIDS after his Indiana school refused to re-admit him once he was diagnosed, fearing the disease would put other students and staff at risk.
A lengthy legal battle put Ryan and his mother, Jeanne White-Ginder, in the spotlight, and celebrities including Elton John, Elizabeth Taylor and Michael Jackson took up his cause. All of it combined to put Riley on the map. And it defined a career of advocating for children – both for Dr. Kleiman and Dr. Cox.
In a matter of years, HIV-AIDS went from a terminal diagnosis to a chronic disease. A remarkable achievement, but a trajectory Dr. Cox believes might not have happened without the brilliance and advocacy of Dr. Kleiman and the voice of a teenage boy who just wanted to go to school.
“I don’t know that a young boy from Kokomo woke up one day and said I’m going to be an advocate for HIV awareness,” she said in an earlier interview. “He wanted to go to school, and he had a family that wanted him to be happy and accepted. His became a voice larger than anyone could have imagined. That voice helped move the needle so much faster because you couldn’t look at him and not somehow relate to him as a kid.”
As a young resident doing a rotation on the infectious disease unit back in 1990, Dr. Cox cared for Ryan before he died April 8 of that year. She recalled not only being impressed by her young patient but also by Dr. Kleiman’s compassionate approach to care and his staunch advocacy for his patients.
“I think sometimes when you’re young you don’t understand how those moments will change you,” she said. “It changed me. It changed Riley.”
It pushed Riley onto the front pages of newspapers throughout the country, as media descended on the hospital.
With support from the Indiana Department of Health, the Damien Center and other partners, along with fundraising through the Indiana University Dance Marathon, Riley built up a strong and respected infectious disease team that Ryan’s family agreed to lend its name to after his death at the age of 18.
Today, Dr. Chandy John leads that team and credits Ryan for his extraordinary wisdom and grace during a time of unrelenting attacks on the gay community and on Ryan and his family.
“He was so wise and ahead of the curve in a time when there was a great deal of phobia,” Dr. John said. “One of the greatest honors of my life is directing this center.”
Ryan White is part of Riley Hospital’s legacy, Dr. Cox said. Not just because of the attention he brought to the hospital and its infectious disease team, but because his case demonstrated how Riley is focused on improving the health of children throughout Indiana.
“In addition, it’s important to know that people like Dr. Kleiman stood up for the rights of people who were suffering,” she said. “It is an important part of our history, and this statue reminds us that’s who we are and this is what we do.”
Dr. Kleiman, now retired and in poor health, was unable to attend Tuesday’s statue rededication, but his wife, Maria, said “he would be so happy to see this back up.”
While her husband was in the media spotlight daily during Ryan’s final days at Riley, he never lost sight of his purpose, and that was caring for all of his patients and their families, Maria Kleiman said.
Their three young children apparently were watching. All three are pediatric physicians today.
“He was so passionate, not only about Ryan but all of his patients,” she said.
Now that the face of Ryan White has returned to the halls of Riley, it is fitting to remember that the young boy who inspired hope and compassion during a time of fear and misinformation continues to show the way forward.
“He is part of Riley Children’s, and this statue is a way to memorialize his spirit,” Peri said. “Many people around the world consider Ryan White a hero, and we at Riley Children’s do as well.”
Photos by Mike Dickbernd, IU Health visual journalist, email@example.com
Thirty years ago today, Ryan White died at Riley - The fear that surrounded HIV/AIDS three decades ago is not unlike the fear many feel amid the current coronavirus pandemic. But Dr. Elaine Cox says there are lessons learned then that guide her today.