Art benefit for Project ARK
“The endless nightmares, the countless sounds of mocking, and not to mention the denial, ignorance and misunderstanding…”
These words appear across the canvas of a painting at St. Louis Children’s Hospital. Woven together with the mastery of a professional and the wisdom of one who truly knows suffering, they belie the age of the artist. She is 17. She has AIDS.
Her work and more like it will be on display and for sake Friday, July 27, from 5 p.m. to 8 p.m., when the Duane Reed Gallery in Clayton will open the doors to a special exhibit called “Hope is Vital” (HIV) benefiting Project ARK. In addition to professional artwork donated to the exhibit, many personal pieces of art designed by pediatric AIDS patients at St. Louis Children’s Hospital will be on auction.
“AIDS is a disease that’s easy to forget,” says Kelly Nolan, pediatric social worker with St. Louis Children’s Hospial, Washington University School of Medicine and Project ARK.
“We need to keep talking about it so people don’t forget that it’s out there, especially as we’re seeing infection rates rising in some populations. We need to do more to make sure people are educated and informed about prevention.”
Thirteen-year-old Josh Pillman is doing his part to inform the community. He speaks about his personal experience living with AIDS to anybody who will listen – college campuses, high school auditoriums, church services.
“I want them to know how you get HIV, how you don’t get HIV, and a little about how I live,” says Josh. “In doing these speeches, maybe I can teach more people about it so kids and other people my age who have HIV can be more open about it and not have to deal with the stigma.”
It’s a stigma that is still very real, resulting from fear of what is unknown or misunderstood, according to Dr. Storch, director of infectious disease at St. Louis Children’s Hospital and Washington University School of Medicine, and founder of Project ARK, the only organization in the St. Louis area that coordinates medical care, social support and prevention services for people living with or at risk for HIV-infection
“We see it in our clinic all the time,” Storch said.
“Patients who reveal their status, either intentionally or inadvertently, often face rejection from close friends, even relatives. They’re ostracized and excluded from communities, churches, schools.”
They may live to endure that ostracism longer than many expect. Advances in treatment have transformed HIV from a death sentence to a chronic and manageable illness.
While the number of AIDS deaths in the U.S. has dropped dramatically in the last decade – from 49,351 deaths in 1995 to 17,011 deaths in 2005 – according to the Centers for Disease Control and Prevention, the number of new HIV infections has remained constant. In fact, they’re rising in two populations – teenagers and African Amerians.
“I’m worried that we’re still seeing newly infected teenagers,” says Storch. “It concerns me tremendously that there are still people engaging in high-risk practices without protecting themselves and their contacts.”
Programs that test new drugs on children have become limited in the United States, making children the most vulnerable patient population, explains Storch.
“Time lapses between research on what’s effective on adults and those drugs being approved in pediatric forms, so kids don’t benefit as quickly.”
Medicines that are effective today may lose power over time as patients develop drug resistances. Jean Pillman of St. Charles worries when that time comes for her two children living with AIDS, ages 13 and five, there won’t be any drugs approved for them.
“They’re closing down pediatric AIDS clinics all across the country,” says Pillman. “How are they going to know which new medicines are safe for children if they don’t test them on kids anymore?”
St. Louis Children’s Hospital is a member of BJC HealthCare. For more information, visit stlouischildrens.org.
