August 12, 2001
Family Affected By Parkinson's Looks to
Stem-Cell Research, Senator Hatch for Help
By Joshua Kors
St. George, UT — Elizabeth Rudman was studying at college when her father's problem started. It began with a dizziness, a terrible spinning and wobbling that would last a week, two weeks at a time. Rudman came home to visit the family and noticed that something was wrong: Her father, Lell Bagley, had always been a vigorous outdoorsman, one who loved to camp and gallop horses. Now just walking down the hall required ginger, deliberate steps. He still tried to do the yard work, but the legs would give and he would fall.
Eventually Rudman's father told a doctor about the symptoms. The diagnosis: Parkinson's disease, a neurological disorder that causes a progressively disabling stiffening of the muscles, impairment of speech and mental confusion.
Today, 11 years after his first symptoms appeared, Bagley struggles to move through his Salt Lake City home without the aid of a wheelchair. Little things, like the division between tile and carpet, will cause him to freeze.
"It's really hard," said Rudman, whose family owns movie theaters in St. George, Cedar City and Mesquite, Nev. "For so long you think your parents are invincible. My dad was a cowboy — he always had a horse, loved to be outside. To know this is going to get progressively worse, it's just hard to have that vision of your dad."
"Parkinson's robs you of your dignity," she said. "It robs you of everything."
The National Parkinson's Foundation estimates that 1.5 million Americans currently suffer from the disease — and that 15 to 20 percent of those patients are relatives of other Parkinson's victims.
Rudman knows this statistic all too well: Her father is the third member of her family to be diagnosed with the disorder. Her grandmother fought the disease for twenty years before her death. Her aunt was diagnosed four years before she died, from cancer, at the age of 64.
As the battle over stem-cell technology escalated this week, Utahns like the Rudmans were watching the developments with a particularly close eye.
In a prime-time address Thursday, Bush offered limited support for the controversial technology. The president said he would approve funding for research on stem cells already extracted from human embryos. He vowed to oppose experiments on embryos yet to be destroyed.
The president's announcement came after months of wrestling with a scientific issue — whether it's embryonic or adult stem cells that merit government funds — and a political issue, whether the government should be funding such controversial research at all.
To Rudman, however, the debate is neither scientific nor political. It's personal: Will this budding field of research lead to the cure her family needs?
Sen. Orrin Hatch, R-Utah, says that it was with families like the Rudmans in mind that he stood before a Senate appropriations committee July 18 in support of stem-cell research. An outspoken advocate for the anti-abortion movement, Hatch has also emerged as a leading voice in favor of stem-cell technology.
"We're talking about Parkinson's, Alzheimer's, cancer, being able to put cells in the brain that might cure those problems," Hatch said. "Why would we allow those conditions to exist without trying to get the very best research done that we can?"
Hatch says that withholding federal funding from stem-cell laboratories would hobble the push for medical treatments. Cures for Parkinson's and other diseases might still arise, but they would take much longer to do so. The bulk of the research, says Hatch, would take place in foreign laboratories without the aid of American universities.
"Our American academic research is far and away the best research in the world," Hatch said. "If we refuse to allow them to participate, to all these people with diseases that could be reversed with these miraculous cells, we're saying, 'Get lost.' And I don't think that's right."
Hatch's position on stem-cell research has earned the senator both adulation and contempt. While many with ill family members have applauded his efforts, notable members of Hatch's conservative base have spoken out against him. They say that when stem cells are extracted from embryos, a human life is destroyed. They also take issue with Hatch's belief that life begins in the womb.
Even a microscopic embryo formed in a Petri dish is a human life worth protecting, says Hadley Arkes, a respected pro-life advocate and professor of Political Science at Amherst College in Massachusetts.
"Life begins with the union of the sperm and the egg, with the genetic identity of two gametes," Arkes said. "When you were that little zygote, that little zygote contained all that was you: your height, your coloring, inclinations of temperament."
"People who say life begins at conception," said the professor, "are simply reciting the facts of embryology."
Arkes, like many pro-life proponents in Utah, feels Hatch's support of stem-cell research marks an inexplicable shift in position. "Something must have gotten into the senator's air conditioning," Arkes said, "because he is fumbling into deep incoherence."
Hatch says he respects the positions of fellow pro-lifers who disagree with him on this issue, but he maintains that the abortion analogy falls flat.
"I think their position is a principled position," the senator said. "But to try to make this an abortion situation, when what you're trying to do is facilitate and extend the lives of people who suffer — I just think that's wrong."
"(Stem-cell research) is a far cry from abortion, which is destroying life, regardless of what you call it," Hatch said.
For many in Utah, though, the debate over stem-cell research is actually more complicated than an issue of whether it facilitates or destroys life. Many people are hesitant to support the research because they fear it conflicts with their religious beliefs.
That group includes Rudman.
Rudman has been active in the Church of Jesus Christ of Latter-day Saints from early in childhood. Though there appears a chance that Parkinson's will affect either her or her four brothers, she remains conflicted in her support of the research.
"I think I'm clouded by having the Parkinson's in front of me," Rudman said. "Like I was saying to (my husband) Tony, strip that away and how would we feel, being as pro-life as we are?"
"If we didn't hear that stem cells could affect Parkinson's, then I'd think, well, destroying embryos — that's no good. I don't want it to morally conflict with my LDS beliefs," she said. "It's hard for me to know how to feel."
Dale Bills, official spokesperson for the LDS Church, has declared the church's official position on stem-cell research. But the July 5 statement takes a neutral stance on the technology.
The statement reads: "While the First Presidency and the Quorum of the Twelve Apostles have not taken a position at this time on the newly emerging field of stem-cell research, it merits cautious scrutiny. The proclaimed potential to provide cures and treatments for many serious diseases needs careful and continuing study by conscientious, qualified investigators.
"As with any emerging new technology, there are concerns that must be addressed," Bills' statement says. "Scientific and religious viewpoints both demand that strict moral and ethical guidelines be followed."
Hatch — who, like Rudman, is also a devout member of the LDS Church — says he wrestled with the religious implications of stem-cell research and prayed about them. In the end, he says, he found a comfort in his decision to support the technology.
"Why wouldn't our Father in heaven want us to utilize these cells for the benefit of extending and facilitating the life of suffering mankind?" he said.
To LDS families who worry stem-cell research conflicts with their religious beliefs, Hatch advises them to study the Church's official statement.
"The Church has said you should approach it with caution," he said. Funding stem-cell research would be the government's chance to impose strict regulations on the science — regulations, the senator believes, that are concordant with the Church's position of caution.
Lawmakers on Capitol Hill adjourned last week for summer vacation. When they return in early September, the Senate is expected to debate a compromise bill by Sen. Bill Frist, R-Tenn. Frist's bill would allow federal funding for embryonic stem-cell technology and create an advisory panel to oversee the research.
But even if the bill were approved today, Elizabeth Rudman knows that research might come too late for her father.
"I don't know if it could help him at this point," Rudman said. Yet she adds that she is still hoping scientists find a Parkinson's cure for the future. "If they would have something to go by for the next generation, oh," she said, "it'd mean everything."