The study, which began in 1982 at the Cleveland Veteran's Administration hospital, raised hopes of creating artificial walking ability for paralyzed people. Doctors implanted thin steel wires in the leg muscles of volunteers, and then sent electricity through the wires, causing paralyzed muscles to move.
But today, Sam Khawam is back in his wheelchair, unable to take a single step. And he claims that the wires which allowed him to walk now threaten his life. Sam and several others among the 63 people who volunteered for the program at this hospital now claim they weren't properly warned that the implanted wires could be hazardous to their health.
Says Khawam: "I wouldn't never, ever joined the program had I known that I would ever even come close to these kinds of infections."
Since leaving the program in 1988, Khawam says he has had 13 surgeries for recurring infections in his lower body. These infections, he says, have been caused by more than 200 wires left behind by researchers.
His doctor, Dudley Giles of Meadville, Pennsylvania, agrees. Dr. Giles says the only way to remove all the wires would be to cut off all of Sam's muscle tissue, or amputate his legs. Dr. Giles believes Sam faces a lifetime of infections. These infections are so severe, they could kill Sam if left undetected.
"I can't deal with it," says Leanne Khawam, Sam's wife, who is also a doctor. "It upsets me every single time."
Sam sued the Veteran's Administration, which paid him $80,000 in a settlement. Two other patients with similar infections have also sued.
Was Khawam treated unfairly?
"We treat all our patients like human beings," says Dr. John Fuessner, chief research officer for the Department of Veterans Affairs. He was provided as a spokesman after Dr. E. Byron Marsolais, the lead physician on the project, declined repeated requests for comment. "If there are adverse effects, that's part of the research. And I think that the benefits and the number of patients who have benefited far out-weigh those that have not."
What angers Sam is what he says was a broken promise from the researchers. The informed consent that he signed in 1982 promised that "non-functional electrodes (which are the wires) will be removed."
So what about the hundreds of wires in Khawam's legs? Says Dr. Fuessner: "That's a sensitive issue and you knowÂ…and you know that's a sensitive issue. I really can't comment." Because of pending litigation, V.A. attorneys limited what Dr. Fuessner could say. Sam has filed another lawsuit against other parties involved in the study. But in court documents, te government claims that there is no objective evidence that the remaining wires fragments are causing Sam's infections.
Not everyone who participated in the study believes it was unfair. Dan Kemp of Traverse City, Michigan, was in the same experiment and has never had an infection. He says he knew the risks: "I knew that with anything you run the risk of infection, maybe even death," he says. But Dan had only 20 wires inserted in his legs, not hundreds.
The Khawams are also concerned that the V.A. is still funding Dr. Marsolais' work. But they've gotten on with their lives with their three children.
And although Sam says he will never again volunteer for a medical experiment, he still dreams of walking again: "That's always in the back of my mind," he says. "I'll never forget that, but I'm hoping for a cure. I'm not obsessed about it. I'm not stopping my life until it happens, but once it happens I'll be very happy."