U.S. researchers' skepticism, despair of patients fire debate on Cuba eye-disease treatment The Burden of Proof

September 20, 1994|By Chris Kaltenbach | Chris Kaltenbach,Sun Staff Writer Marcia Perskie of The Sun's Mexico City Bureau also contributed to this story.

For thousands of people slowly losing their sight to a degenerative eye disease, it sounds like a miracle cure: a treatment devised by a Cuban opthalmologist that he claims can prevent retinitis pigmentosa from stealing their vision.

But the Baltimore-based Retinitis Pigmentosa Foundation is recommending against going to Cuba for the treatment -- despite patients who insist they left Havana with their vision improved considerably. The foundation's position, which has generated considerable controversy among RP patients, is based on what it insists is a lack of scientific proof the treatments work.

"Right now, we don't have any evidence of any improvement" in the vision of people who have undergone the treatments, says Robert M. Gray, executive director of the RP Foundation. "There's no evidence showing that it works. And until you've got evidence, medically and scientifically, we cannot go out and recommend this."

Retinitis pigmentosa affects an estimated 100,000 people in the United States. An additional 6 million are going blind due to other conditions that affect the retina, including Usher syndrome (which can also cause hearing loss). Patients lose their sight slowly, usually experiencing a narrowing of the field of vision to the point where they effectively are looking through a dark tunnel that lets in only a small beam of light. Some go completely blind.

There is no treatment for the condition, although some research suggests Vitamin A can help slow the degeneration.

In essence, the dispute pitting RP patients against an organization long in the forefront of searching for a cure boils down to a difference over what constitutes proof. For the scientific community, proof is accumulated over years: hundreds of tests performed on dozens of patients over thousands of hours in a controlled environment, with results published in scientific journals and subjected to peer review.

Researchers here say the Cuban treatment rests on outmoded theories about the cause of RP. They say the treatments could further damage a patient's eyes, and many believe research dollars could be better spent elsewhere.

But for the man with RP who knows that in a few years he won't be able to look into his wife's eyes, or the woman faced with never being able to see her child smile again, hearing people say the treatments have helped is all the proof they need.

While few are ready to proclaim the Cuban treatments a cure, they wonder why American researchers haven't paid more attention. Some note with disappointment, if not disgust, that no one associated with the RP Foundation visited Cuba until June -- about two months before an NBC newsmagazine segment spotlighted the controversial treatments.

A right to try it

"People have a right to [try] this, to find every avenue that they can explore -- for their lives and for their children," says Helen Harris, founder of RP International, a Los Angeles-based group that raises money for research into the disease and treatment for those who suffer from it. "I don't understand all this negativity about Cuba."

At the center of the controversy is Dr. Orfilio Pelaez, an unassuming, gray-haired doctor his proponents say is a dedicated surgeon who has succeeded where eye researchers throughout the world have failed. But his detractors warn that people traveling to Cuba not only risk fines and imprisonment -- traveling to the Caribbean island is still illegal for almost all Americans -- but also pay thousands of dollars for a treatment that may give them hope, but nothing more.

"We just can't recommend that people take their life savings or, worse than that, take very serious [health] risks for a treatment for which there is no scientific data to back it up," says Gordon Gund, owner of the Cleveland Cavaliers NBA basketball team and chairman of the board of the RP Foundation. "There are known examples of people who have had their sight damaged by this surgery."

But supporters decry the American medical community's refusal to take Dr. Pelaez seriously.

"The RP Foundation has not handled themselves well on this thing. They had not done anything" to try and substantiate Dr. Pelaez's claims, says Bob Stafford, a native Baltimorean now living in New Jersey. "There are too many people reporting good results" for the Cuban treatments to be ignored.

Mr. Stafford, who suffers from RP, says his vision increased substantially after being treated by Dr. Pelaez. While he can't swear the Cuban procedures work, he says the results should have been tantalizing enough to persuade the foundation to look into them more deeply. He's spent much of the past year doing just that.

"I have never claimed to have found a miracle in Cuba," he says, "only that people here need to get off their fannies."

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