 |
 |
-- [ From: Seymour Gross * EMC.Ver #2.5.3 ] -- The following appeared on page A13 of the February 3, 1999 edition of the Philadelphia Inquirer: Among the science and statistics, senators get real-world view By Rachel Simon Sometimes stepping forward makes a difference, even when your feet won't move. A month ago, I wrote about Richard Pikunis, a 30-year-old law school graduate with Parkinson's disease. Because the part of his brain that produces the chemical dopamine is mysteriously dying - no one knows why Parkinson's happens - he's losing the ability to stride. Eventually, all movement will stiffen; speech and swallowing will lock up, too. Like approximately a million Americans, 5 to 10 percent of whom are diagnosed under the age of 40, Richard is becoming a statue. But in these days of the Michael Jordan mournfest, it's good to remember : You don't have to be an athlete to change the world. One of the people who read that commentary was Sen. Arlen Specter, chairman of the Senate Appropriations Subcommittee for the Departments of Labor, Health and Human Services, and Education. His subcommittee had scheduled a hearing on stem cell research. Stem cells are the primordial cells from which all other cells develop. They were isolated for the first time last November, derived from excess embryos created in a fertility clinic. Theoretically, if stem cells are introduced into a brain with Parkinson's, they might produce dopamine. They could also treat heart disease, cancer or stroke. But the National Institutes of Health, to which Specter's subcommittee makes recommendations, has been prohibited from using federal funds for research by the congressional ban on research using human embryos. So Specter, considering whether Congress should lift the ban on stem cell research, invited Pikunis to testify at the hearing. And two weeks ago, this resident of Marlton, customer service representative at Shop Rite and future lawyer went to Washington. He rose at 4:30 a.m. - a challenge when your body won't rise. For some years, his mobility has come courtesy of the medication L-dopa, but it wears off after a few hours, leaving the Parkinson's to settle in like concrete. Mornings mean a fight against rigidity, an act of will to take a pill. Eventually, L-dopa will cease helping him, which heightens his resolve to speak out. Pill swallowed, his body thawed. Then he and a friend from Shop Rite rode a train to Washington. A storm was predicted; they hoped to encounter no ice. At 9 a.m., Pikunis sat at the witness table, before Specter and Sen. Tom Harkin (D., Iowa), beside scientists and Ph.D.s. Beneath the fancy ceiling with gold trim, he struggled to follow the scientific talk until it was time to speak. Then he told how Parkinson's walked down the aisle at his wedding, weighed down his hand at law school. Now, "my son just celebrated his first birthday and is learning to walk, as I am slowly losing my ability to do so." He wondered whether he'd be able to teach his children to ride a bike. But "the choice may not be mine to make." Not until he finished did nervousness rush in. Then, the hearing adjourned, and Richard stepped out into the sunlight. The storm had not come; a spring-like breeze swept through the streets. "I found him to be a very fine young man who is facing a very difficult problem," Specter later said, "and really responding in a heroic way." Specter was so impressed that he announced during the hearing that he would draft legislation to lift the ban on NIH funding. Later he added, "It should allay the fears of people who think we may be destroying human life." In the week since then, NIH has announced that the ban doesn't apply to stem cells, since they are not viable on their own. Specter is continuing to review the new NIH ruling. If he doesn't feel it is comprehensive enough, he will go ahead with his proposed legislation. And, says his deputy chief of staff, John Ullyot, if it becomes a fight in Congress, Specter will "absolutely" support funding for stem-cell research. His mind, after all, is made up. After the hearing, Pikunis and his friend toured Washington. But soon his left foot started dragging, his shins grew sore, and he began to turn into a statue again. He swallowed his pill, and with effort they returned to the train. On the way home, he began to move once more. Exhausted, aching - but feeling good. He had gone from Shop Rite to the Senate. His stepping forward might bring life to millions who suffer from Parkinson's and other debilitating conditions. Someday he'll tell his son, "I once testified before the Senate." Maybe by then he'll be able to run upstairs to get the witness list. A list filled with Ph.D.s and scientists and senators, and Richard Pikunis' name, too.