Soviet Treatment Saved Vision, Man With Retinitis Pigmentosa Insists

When Todd Cantrell was 12 years old, his desperate attempt to save his sight made national headlines when he bucked the Cold War and American medical opinion by traveling to Moscow for experimental treatment.

“I could see very little,” Cantrell says now, 11 years later. “I couldn’t even go outside when it was cloudy.”

Today, Cantrell is a 23-year-old man living with his parents on the edge of the north Georgia mountains. He says the treatment he received in Moscow helped save him from retinitis pigmentosa, commonly called tunnel vision.

Though American doctors doubt Cantrell’s claim, saying the disease is untreatable and invariably causes blindness, he is adamant that the Soviet treatment worked--to dramatic effect.

“It changed my life all the way around,” he said. “I had more self-esteem.”

Reporters followed the young Cantrell during his two trips to Moscow, which were paid for with the help of a fund-raising drive sponsored by a Dalton radio station.

The cheerful 12-year-old who seemed to get along with every Russian he met contrasted with the Cold War backdrop of the period. A year earlier, President Jimmy Carter had kept the U.S. Olympic team home from the Summer Games in Moscow to protest the Soviet invasion of Afghanistan.

Cantrell underwent a treatment called ENCAD at the Helmholtz Institute in Moscow, once in 1981 and again in 1983. Most U.S. doctors reject the treatment, which involves injecting a liquid form of yeast into the retinas, but Cantrell and his family have no doubts that it worked for him.

“Without it, I feel that Todd would already be blind,” said his mother, Betty Cantrell.

Cantrell is not completely blind. But he can’t drive, he needs an arm to lean on when walking in unfamiliar territory and he often looks down to avoid bright lights, which can hurt his eyes.

According to Dr. Robert Marmer, Cantrell’s ophthalmologist in Atlanta, Cantrell now has about 5 degrees of vision. A person with normal sight can see about 180 degrees.

Cantrell’s vision has remained essentially stable since he underwent ENCAD, Marmer said. In 1981, Cantrell had about 8 degrees of vision. Most of the 100,000 or so Americans with retinitis pigmentosa lose 15% of their vision a year until they go blind, a process which usually takes about five years.

Before the treatment, Cantrell said he could barely see. But after his first round of treatments, he said, his vision improved enough that he was able to hit a softball and even play video games.

Ophthalmology researcher David Birch counters that faulty tests and wishful thinking have been used to make the case for ENCAD.

Birch, of the Retina Foundation of the Southwest in Dallas, said some patients report improvement on subjective tests that allow them to analyze their own vision. Patients naturally want to believe their vision is getting better, so they fib on the tests, he said.

Birch said he has used objective vision tests on patients who underwent ENCAD.

“What we found was that these patients were getting worse just as fast as the patients who weren’t going to the Soviet Union,” he said.

“I think everybody wants a breakthrough,” he said. “I understand why these families are so motivated. I’m sure if my child had RP, I would follow any lead that showed any promise at all. I just think they should demand strong evidence before they go chasing one of these treatments.”

The Board of Trustees of the Baltimore-based Retinitis Pigmentosa Foundation voted to reject ENCAD in June, 1983, after doctors visited the Helmholtz Institute.

The foundation said resources spent researching ENCAD in the United States would be a waste because there was no conclusive scientific evidence the treatment had value.

“I think that’s a bunch of baloney,” said Betty Cantrell, who has hounded the U.S. Food and Drug Administration for years to get ENCAD approved in the United States.

The agency has not approved ENCAD, and it is not under study.

Cantrell just smiles and shakes his head when he hears criticism of the treatment. Without ENCAD, he said, he never would have been able to land a job at a local store, graduate from high school or go to the prom.