Dr. Elaine Cox used to make house calls to the homes of children dying from AIDS, children too sick to make it to Riley. It became an all too familiar ritual attending the funerals of tiny patients who had died from the disease.
It was late March of 1990 when the phone call came to the hospital. The message was heartbreaking.
Dr. Martin Kleiman turned to his team with a somber look.
“I need to go out. I need to take this call,” he said. “It’s Ryan. He’s in California and he’s bad.”
Ryan White wanted to come home to die. He wanted to come to Riley.
“He was getting sick and he wanted to be with Dr. Kleiman,” says Elaine Cox, M.D., who was working alongside Dr. Kleiman -- a world-renowned pediatric infectious disease specialist -- as a fourth year medical student at Riley Hospital for Children at IU Health. “Ryan felt comfort with Dr. Kleiman. He had been Ryan’s biggest advocate.”
Ryan, the Kokomo boy who without meaning to, without wanting to, had become the face of a worldwide health epidemic: AIDS.
He had fought a nearly six-year battled filled with discrimination and fear and hate. He had found an ally at Riley.
“That was Ryan’s last admission,” says Dr. Cox, who spent her career in infectious disease and is now Riley’s chief medical officer. “When you’re young, I don’t think you know how much serendipity impacts your life.”
Yes. It was chance that Dr. Kleiman became Dr. Cox’ mentor and her greatest career inspiration. As she saw what he had done to care for and fight for Ryan – and other children with infectious disease -- a spark was ignited.
In her own career, Dr. Cox was a monstrous advocate for children with AIDS. She would make house calls to the homes of children dying, children too sick to make it to Riley. It became an all too familiar ritual attending the funerals of tiny patients who had died from the disease.
When that call came for Dr. Kleiman 28 years ago, Ryan had less than two weeks to live. He was at the end of his battle. He died April 8, 1990.
Today, Ryan would be 47 years old. It’s hard to imagine the fresh-faced boy with his twinkling eyes and sweet smile as a middle aged man.
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Ryan was given his diagnosis at Riley on Dec. 17, 1984. Dr. Kleiman told the Kokomo boy – a 13-year-old hemophiliac who contracted the disease during a blood transfusion – he likely had six months to live.
His T-cell count was 25. The T-cell count of a healthy individual is 500 to 1,200.
But Ryan outlived that prognosis by years. He went on to drive and was just a month shy of graduating high school when he died.
During those six years, Ryan became a worldwide voice for AIDS after being kicked out of his Kokomo school. It was a time when people knew little about the disease and how it was transmitted.
“What made Ryan special was his willingness to speak out,” says Dr. Cox. “He just wanted to be a kid.”
Before Ryan, AIDS was a disease people thought was reserved for gay men and IV drug users. Parents feared that if Ryan sneezed or even touched their child, they might contract it.
Nothing, seemingly, would convince them otherwise.
“Ryan and his mom and his sister, they were these regular people who weren’t asking for the moon. They just wanted a regular life,” says Dr. Cox. “Jeanne (White) was a mom who was also fighting every day to keep her child healthy. I think their bravery is what set them apart.”
And not just their bravery. Dr. Kleiman stepped up, too, when he didn’t have to.
“In his quiet sort of way, he is a lion,” Dr. Cox says. “Without question, he stood up and said, ‘This is not fair. This is not just. This is not right. There is no reason this kid cannot go to school.’”
Ryan was allowed to attend Western Middle School in Kokomo for eighth grade, but he hated it. He was forced by the school to eat with disposable utensils, use a separate bathroom and he was not allowed to participate in gym class.
There were numerous threats made to his family. When a bullet was fired through the White's living room window (no one was home at the time), the family decided to leave Kokomo. Ryan was welcomed at Hamilton Heights High School in Cicero.
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Ryan wasn’t the only child or teen with AIDS at the time. There were others – but most weren’t speaking out.
“You have to remember in that time people were afraid to say they had it,” says Dr. Cox, who after medical school did her residency at Riley, working with Dr. Kleiman every chance she got. “I had a teen who let their entire high school think they were dying of cancer because they didn’t want anyone to know they were dying of HIV.”
After going to Ohio for a few years after residency, Dr. Cox came back to Riley in 1995. It had been more than a decade since Ryan’s diagnosis, yet people were still very nervous about taking care of kids with AIDS, Dr. Cox says.
Only one medication had been approved in children. Dr. Cox was asked by Dr. Kleiman to create and direct a pediatric HIV and AIDS clinic at Riley.
In six months, Dr. Cox and her colleagues opened The Ryan White Center for Pediatric Infectious Disease and Global Health at Riley. She ran the center for 16 years, seeing nearly every child affected by HIV and AIDS in the state.
In those years, Dr. Cox was a part of so much .
“Drugs started coming out and testing started coming out and everything changed,” she says. “We switched from worrying about how to help their family with terminal care to how we’ll help them navigate life with this disease.”
To see such a dramatic shift in treatment of a disease in one career has been fascinating, says Dr. Cox.
“It really is amazing. It went from this will kill you into this chronic disease. Yes, you don’t want it, but we can manage it,” she says. “To see that over such a short period of time is really rare for one career.”
Dr. Cox feels blessed to have been a part of it.
“It was one of those amazing times to be in that field where everything was coming together,” she says, “where everything you hoped your medical career will be happened.”
-- By Dana Benbow, Senior Journalist at IU Health. Reach Benbow via email dbenbow@iuhealth.org or on Twitter @danabenbow.