This feature article appeared on the front page of the Daily News, Bowling Green, Kentucky, Sunday, August 14, 1997.
by Jason Riley
Red tape strangling hope for cure
Richard Simpson is fighting a battle with time, a battle with the government, and a battle to keep his eyesight.
Simpson, a 50-year-old Bowling Green resident, is losing his sight t a rare disease called retinosis pigmentaria. The hereditary disease causes people to lose their sight gradually until they are totally blind.
Retinosis pigmentaria strikes only one in 4,000 people, but seven men in Simpson's family have it and four are blind.
Simpson first noticed problems with his eyes at age 5, when he developed night blindness. He did not develop serious problems until much later.
"At about age 40, I started to see a drastic difference. My eyesight got real hazy and closed in like tunnel vision," Simpson said. "I had to quit driving at the age of 42. Without a treatment, my lights will be out in the next five or six years."
With no known treatment in the United States, Simpson started his own research about three years ago by using the Internet. He eventually found a treatment being used in Cuba.
"The Cuban treatment is the only thing I've found that has any merit in it. A lot of so-called cures are merely hocus pocus," Simpson said. "I'm not reaching for a pie in the sky, I'm just looking for a shot."
Another person who believes this treatment is definitely not trickery is Dr. Robert Marmer of the Marmer Medical Eye Center in Atlanta. Marmer went to Cuba four years ago as a medical advisor for an ABC news crew that did a story on the clinic.
"This clinic is for real. There are people that say the clinic is just in it for money, but those people have had no first-hand information," Marmer said.
Marmer was allowed to examine the patients operated on in Cuba and to look at their records. He found that the operation stopped further progression of the disease in every patient he saw.
"This disease is supposed to make a person's field of vision get smaller and smaller and become tunnel vision and eventually total blindness. These patients' eyesight did not get worse," Marmer said.
"The disease not only stopped getting worse, the patients' colors became more vibrant, they could see patterns, walk without being led, and basically function more normally," he said.
Simpson has also seen what the operation can do first hand.>/p>
But the federal government won't allow him to go to Cuba.
"There is an embargo from the time Kennedy was president during the Cuban missile crisis and it is still in place. Americans are not allowed to spend money in Cuba," Simpson said.>/p>
Those who do are going illigally through places such as Canada or the Bahamas. Simpson is hesitant to try this because if caught, he said he could face up to five years in prison and a stiff fine.
Simpson's wife, Connie, said the choice ultimately lies with her husband, but a trip to Cuba without a visa is not exactly something she would look forward to.
"It is such an unstable country, What if we couldn't get out? I would be very worried about my children," she said. "I think it would be better to go through the proper channels."
The proper channel right now, she said, is Kentucky 2nd District Congressman Ron Lewis.
Lewis' communication director, Shawn Pinkston, said they have given Simpson the phone numbers for the Cuban Embassy and the federal Department of Treasury, the only agencies that can grant permission for the trip.
If Simpson were to go to Cuba, legally or illegally, he would go to the Camilio Cienfuegos Clinica in Havana. The operation would be a three-week process that would cost around $10,000.
The process does not reverse the effects of retinoisis pigmentaria, but can stop any further progression, which would be just fine with Simpson.
"If I knew that I could live to be 70 and still have the sight I have right now, I would be one thrilled guy. The idea of going totally blind is really scary," Simpson said. "Most of my family went blind at an earlier age than I am now. I know where I am headed," he said. "The Cuban treatment is my only shot."
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