Sunday, October 08, 2000

Patient frets over halt in MD testing

By Charley Gillespie
The Associated Press

        COLUMBUS — Last year, Donovan Decker became the first recipient of a gene therapy injection to test the safety of a possible treatment for muscular dystrophy. Now he's worried his cure won't come soon enough.

        The experiment ended abruptly after the death of a teen-ager who received another gene therapy treatment.

        Mr. Decker, of Huron, S.D., suffers from limb-girdle muscular dystrophy, a disease that mostly damages muscles that stabilize the hips and shoulders. The 36-year-old air traffic controller cannot walk long distances, and he's getting worse.

        Researchers at Ohio State University Medical Center in conjunction with the University of Pennsylvania injected the therapeutic gene into a muscle on the top of Mr. Decker's foot on Sept. 3, 1999. The injection contained a cold virus modified to carry genes for a muscle protein Mr. Decker was missing because of a genetic flaw.

        The injection was sufficient only to test the procedure, not actually improve Mr. Decker's condition. Doctors also warned him of a risk that the procedure could worsen his condition and put him in a wheelchair earlier than expected, Mr. Decker said, but he recalls feeling happy and hopeful at taking some action.

        “If nothing is done, I am pretty much going to be in a wheelchair in three years anyway,” Mr. Decker said.

        Adding to Mr. Decker's urgency, four of his seven siblings have the disease. His only sister without it has two daughters with MD.

        “A couple of my sisters are in wheelchairs all the time,” he said.

        Mr. Decker's mother, Ruth Weber, found out 21 years ago that five of her children have MD.

        “It was very traumatic. You have your hopes and dreams for your kids, and I thought they wouldn't be able to do anything,” Ms. Weber said. “Which was wrong because they all have excelled in their lives.”

        Ms. Weber is thankful just two of her 20 grandchildren have the disease, but is worried because her youngest grandchild, at 19, is having problems more quickly than expected.

        “It's hard to watch them when I have been able to walk all of my life. I know what they miss,” she said. “It's a day-by-day, minute-by-minute struggle for them.”

        She is frustrated over the halted experiment.

        “I hope we can get started again on the trials,” she said. “When things are moving your hopes stay higher ... your spirits stay higher.”

        Mr. Decker was the first of an expected six participants in the Muscular Dystrophy Association-funded experiment.

        The testing was stopped after Jesse Gelsinger, 18, of Tucson, Ariz., died Sept. 17, 1999, four days after a gene was injected into his liver to combat an inherited disease.

        Mr. Gelsinger's family filed a wrongful death lawsuit against his doctors and the University of Pennsylvania last month.


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