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.
By Maureen Gilmer, IU Health senior journalist, email@example.com
Thirty years ago, a teenager died at Riley Hospital for Children at IU Health. His name was Ryan White.
Thirty years ago, a young medical student was training at Riley, learning about infectious disease, compassionate care and her life’s purpose. Her name was Elaine Cox.
Today, Dr. Elaine Cox is chief medical officer for Riley, a job she doesn’t believe she would have without the mentoring of Dr. Martin Kleiman, a world-renowned pediatric infectious disease specialist who not only treated his young patients medically but advocated for them at the local and national level.
It was Dr. Kleiman who told Ryan that he had AIDS when he was 13. That was in December 1984 when little was known about the disease except that it was likely a death sentence. Acquired immunodeficiency syndrome interferes with the body’s ability to fight infection and disease.
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, terrifying people of all ages, ethnicities and backgrounds who didn’t know for sure how it was transmitted.
Parallels can be drawn between that deadly disease three decades ago and today’s worldwide outbreak of COVID-19. The latter is a new virus, it can be deadly, and there is no cure.
“It’s so interesting to think about the juxtaposition of the two disease processes,” said Dr. Cox, recalling AIDS as a disease that “terrified everybody” in the 1980s and early 1990s.
“Back then people were fearful because we didn’t know how the disease spread and how to protect ourselves. We didn’t have meds or full testing. It was an epidemic that took countless lives in a non-discriminatory manner. Now here we are again – limited testing, limited PPE, fear, lack of meds,” she said.
“But this also gives hope and an optimistic view. We have been in a fight with an infectious disease before, and now, 30 years later, it is manageable. That gives great hope that COVID will eventually be an era in medical history that changed the world for a while but not forever.”
Dr. Richard Schreiner, who served as Riley’s physician-in-chief for more than 20 years, didn’t treat Ryan, but he remembers Dr. Kleiman as “an absolute master” at dealing with the crush of media attention on the hospital during that time.
Asked if there was an element of fear in the hospital surrounding the care of AIDS patients, Dr. Schreiner said he didn’t see that fear but acknowledged that he wasn’t on the front lines.
“Obviously, there was a tremendous amount of fear outside the healthcare system. Nobody knew very much. And what people knew, similar to COVID, is there weren’t many pieces of information that were universally agreed upon then.”
While we lack perspective now for this latest mystery disease, we can draw on some of the lessons we learned during the AIDS crisis, he believes. There are a lot of similarities.
“It’s all new, it’s got to be studied and argued, and down the road, whether it’s a year from now or five years from now, it will all be worked out and people will say, ‘I told you so.’ But we really don’t know now. And lack of knowledge brings fear in people.”
THE FACE OF HIV/AIDS
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. “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.”
Ryan became a national poster child for HIV/AIDS after his Indiana school refused to re-admit him, fearing the disease would put other students and staff at risk. At the time, AIDS was poorly understood by the public, despite attempts to reassure people that it is not an airborne disease and spreads solely through body fluids.
A lengthy legal battle put Ryan and his mother, Jeanne White-Ginder, in the spotlight, and celebrities including Elton John 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.
She was a third-year medical student in 1989 when she first worked with Dr. Kleiman and helped care for Ryan at Riley. In her fourth year, she did another rotation in infectious disease, and that’s when Ryan got very sick. She saw him in March of 1990. He died April 8, 1990.
“I had no idea how this would impact my life,” she said, “but life has a way of leading you where it wants you to be.”
In her case, that meant leading her back to Riley five years later.
She was hired by Dr. Kleiman to return to Riley in 1995 to do primary care for the HIV-positive population and to help set up a clinic, which became the Ryan White Center for Pediatric Infectious Disease.
She thought she might stay a year or so. Instead, she ran that clinic for 16 years.
Like her mentor, she became an outspoken advocate for children with AIDS. She made house calls to the homes of kids with the disease when they were too sick to come to the hospital.
“It’s not like I was a leading HIV expert,” she said. “I was in a clinic in the middle of Indiana trying to treat kids, and yet every day there was something new coming; somebody had made some discovery. It was exciting because you could see real impact.”
RYAN WAS JUST A KID
Andrew Harner was a young social worker at Riley 30 years ago and says one of the things people forget about Ryan is that he was first and foremost, a kid.
“He had a family who loved him and a medical team who did everything they could to keep him healthy. The staff at Riley, including Dr. Cox, took care of Ryan and his family regardless of the fear and lack of knowledge with regard to HIV or its impact to themselves.”
And Ryan used his celebrity connections to educate others about HIV/AIDS and his underlying health condition, hemophilia.
“Ryan White represented all of the almost 10,000 patients with hemophilia across the U.S. who had HIV,” Harner said. “Many of them lived in secret. They were scared that they would not be able to go to school or play with their friends or how their communities would treat them.”
Ryan and his family’s willingness to go public gave others hope that people would show compassion. Many communities and organizations, including Riley, did provide the support they needed. And today, Riley staff continue to help families not only with their medical needs, but with their social, emotional, spiritual and financial needs as well, Harner said.
After Ryan’s death, so much happened in HIV care in a relatively short period of time, Dr. Cox said, between activists pushing for drugs to treat it, researchers learning how to diagnose it, physicians figuring out how to best care for their patients, and the community eventually opening its arms to those suffering from the disease.
A TEEN’S LEGACY
IU Dance Marathon was born during that time after a student became acquainted with Ryan’s case. Thirty years later, the Riley Dance Marathon program in Indiana is Riley’s fastest-growing fundraising event program, with more than 60 high school and collegiate programs and more than $50 million raised.
Thanks to the advocacy of Ryan, his family, his doctors, Riley and others, the Ryan White Comprehensive AIDS Resources Emergency Act was enacted Aug. 18, 1990, becoming the largest federally funded program in the United States for people living with HIV/AIDS.
Dr. Kleiman is retired now and battling health problems of his own, but Dr. Cox said his influence made her a better doctor and a better person.
“He was out there lobbying for these children to be cared for and treated well, while at the same time managing this awful medical illness in a child he had a long relationship with. He was a lion.”
Her mentor taught her everything she knows about infectious disease and a tremendous amount about what it means to be a doctor, she said.
“He’s of that generation that never forgot that being a doctor and being in people’s lives is really a privilege and that you should never complain about your job. You’re there at their worst times and at their best times and you can go home at night and know that your job mattered. He never let go of that,” she said.
She has the benefit of perspective now, something that often eludes the young.
“My life was significantly impacted by a disease I did not have,” she said.
It taught her the importance of being a lifelong learner, of building a network of contacts around the country. She gained an appreciation for team-based care and how fellow medical providers were there to help her learn and move the discipline forward.
“It also clarified for me that writing out prescriptions was never going to be enough. The piece of it that I really loved was the advocacy piece – we are here to improve the lives of children and their families, and that’s more than just giving them their pills.”
It involves community partnerships and wrap-around services for families, things Riley was doing 30 years ago before they were buzzwords. AIDS service organizations came to her clinic every week and did care coordination for her patients. They became a village for those families.
LESSONS TO LIVE BY
“That was my first foray into community partnerships, but that part has always appealed to me. I wouldn’t be sitting in this chair had I not had that early experience. I don’t see patients much anymore, but my focus has shifted from individual patients to across the pediatric population. How do we impact their well-being in a broader way?”
Those early lessons from Ryan and her other HIV-positive patients have stayed with her through the years.
“Somehow they were brave enough to go through what they went through, and when that happens they make you say, OK, if they are this brave, what can I do in my position to be brave for them?”
Riley was already following a model of family-centered care before the AIDS epidemic, but the illness helped crystallized the mission. The hospital stands with patients who need help regardless of how they need it, she said.
“We’re not afraid to go to battle,” Dr. Cox said. “If it’s lobbying for new drugs, or for faster release of drugs, or keeping down costs of drugs, or coming up with funding streams, we will sign on to that. We’re not afraid to go to the Legislature and say we have to change the rules.”
But it’s more than that.
“I always feel lucky to work here at Riley between IU Health and the IU School of Medicine because I feel like a lot of places want you to have this party line and you have to vet everything you do. I’ve never felt that here. People say Riley is here to be on behalf of children and their families no matter what it takes, and we’re going to stand up and be the voice of that.”
Ryan White and the AIDS crisis was a living example of that commitment to children, she said.
“There was so much uncertainty, but Dr. Kleiman refused to give in to the paranoia. He said we are going to help these children and the state is going to look to us to see how it should be done – a North Star for how we should be treating people.”
Harner, who leads Riley’s social work department today, said Dr. Cox’ collaboration and leadership in Ryan’s care mirrors her leadership today.
“She has the gift of being able to relate to and connect with patients, families and staff regardless of their role, position or status. I have always appreciated that with all of the competing agendas, she never fails to put patients first.”
Between the Ryan White Care Act, testing programs, advocacy and Dance Marathon, Ryan’s legacy is larger than anyone thought possible, Dr. Cox included.
“It’s rare in medicine, particularly pediatrics, that one patient has such an impact. You always have those you remember, but to actually define a department and an era of a discipline, it’s very hard to relate that to one person, and we can do that. One little voice lifted it to a whole different level.”
She has a picture of herself that was taken earlier this year next to a life-size cutout of Ryan at the Ryan White exhibit at The Children’s Museum of Indianapolis.
“He would be 48 this year,” she said. “But he’s frozen in time. He’ll always be young.”
A teenager who changed the face of an epidemic.