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Medical Trials

Listen to this Commentary!

By Leah Chapple Stingley

To develop new drugs that work on kids, medical researchers need healthy and sick volunteers to sign up for their studies. While a lot of pediatric studies are successful, some are controversial because of the risks and incentives involved. Youth Radio's Leah Chapple Stingley found out what it's like for kids who lend their bodies to science.

SCRIPT:
Leah: When I first heard about medical research, I wondered why anyone my age would put themselves through that. Then I met James Street. Without a drug called Embrel, James would probably have trouble getting out of bed in the morning.

James: Well, first I had to use a walker, and then I had to use crutches, and now I don't have to use them at all.

Leah: James has Juvenile Rheumatoid Arthritis, which means his joints are swollen and stiff. He's 12 now, but when he was little, the drug Embrel was still in a testing phase. His parents took a chance and signed him up for a drug trial.

James: Well, when I was on Embrel, when I first started it...they would decide, you either had to be on Embrel or placebo, which... It's fake really. I realized that I was on placebo 'cause the next two days afterwards, I became stiffer…

Leah: James started on Embrel, then switched to a placebo. Researchers switched him back to the real medicine when he started to get sick. Doctors try to design pediatric drug tests so that sick kids don't have to get sicker to prove a scientific point. The drug James tested is now approved to treat Rheumatoid Arthritis in kids. That's the way everyone wants these stories to end. But at the beginning stages of a medical study, researchers often need to recruit healthy kids… to compare with the sick kids.

Leah: Perfectly healthy 17-year-old Candace Burke is in this hospital room at the University of California San Francisco because she's volunteered for a bone study. It's designed to figure out if kids with Lupus Syndrome are more likely than healthy kids to get osteoporosis.

Leah: Candace is lying in a scanning machine while technicians x-ray her bones. She also has to give blood and pee in a cup.

Leah: For just two hours of her time, Candace earns fifty bucks. Not bad in today's economy. Candace thinks she's mature enough to decide for herself whether to participate in these medical tests, still her parents had to sign a permission slip, required for volunteers under 18.

Candace: It's not like a pity thing, it's just…I'm healthy, it doesn't take up barely any of my time, my family's here… It's not like a hassle or anything...

Leah: Even in low-risk studies researchers offer all kinds of incentives to encourage young people to participate.

Researcher: I have three choices for you, I have two Jamba juice gift certificates, blockbuster certificates for ten dollars, and then these are movie passes to United Theaters where you only have to pay $1.00...

Leah: Candace chose the movie tickets, and pocketed 50 bucks in cash. I can see why college students like me might volunteer for this and even scarier medical procedures that pay more money. At UCLA there's a call out for females as young as 18 with premenstrual syndrome who can make a few hundred bucks if they'll have two spinal taps and fill out some forms about their moods. Candace Burke joined the bone study at University of California saying she wanted to help sick kids her age. But judging from the look on her face, the money didn't hurt...either.

Leah: As for me I don't think I could do this. Sure it's nice to help scientific research and get some free movie tickets in the deal, but I'm not that trusting. You'll never find me rolling up my sleeve for anything more experimental than a flu shot.

For NPR News, I'm Leah Chapple-Stingley in San Francisco, California.

Host Back Announce: That report was produced by Youth Radio.