Stem Cell Controversy Stirs Emotions Among Those With Chronic Diseases
For 11-year-old Arianna Helfant, stem cell research is far more than an elusive topic being debated within the White House and the halls of Congress.
She sees it as a potential cure for her juvenile diabetes.
In contrast, Georgeanne Cifarelli believes stem cells offer a false promise for her husband and others who suffer from advanced Alzheimer’s disease.
President Bush’s decision last week to allow federal funding for limited research on stem cells has unleased a flood of emotions and questions among many of the 128 million patients with chronic diseases nationwide.
“Will this work for me?” they ask. “How soon will we see results?”
Stem cells taken from very young embryos offer great potential, researchers say, because they can be turned into different tissues.
That, in theory, will allow researchers to replace dopamine-secreting neurons in the brains of Parkinson’s patients and insulin-producing pancreatic beta cells in diabetics.
As a juvenile diabetic, Arianna looks forward to when she doesn’t have to test her blood six times a day or give herself three shots of insulin. Maybe stem cell research will allow her to eat ice cream with friends, attend overnight summer camp and fall asleep without worrying about her blood sugar level.
“I don’t even remember what it’s like to not test my blood sugar and take shots,” said Arianna, who lives in Los Angeles and was diagnosed with diabetes at age 6. “Every day, I’m hoping for a cure. It’s something that I’m always thinking about.”
Cifarelli refers to Alzheimer’s as the “devil’s disease” because it has eluded researchers for so long. She isn’t following the stem cell debate because she says it’s of no use.
“The way we get through this every day is to say, ‘Forget about the past. The present is important.’ And we don’t speak about the future,” said Cifarelli, who lives in San Marino. “We just live in the present and take one day at a time. You don’t have time to do anything else.”
Her husband, Nicholas, was diagnosed as having the disease more than five years ago, and he has lost most of his faculties. Before the disease, he was an internist and chairman of the bioethics committee at San Gabriel Valley Medical Center. Two medicines briefly stopped the progression of his disease, but neither work anymore.
“I cannot ever imagine a day when they’re going to find a cure for this, no matter what,” Georgeanne Cifarelli said. “We need it right now. We need something right now.”
It’s no surprise that patients and caregivers respond differently to the promise of research. Audrey Goldman, who counsels patients with multiple sclerosis, said the reactions may be a function of how much the disease has progressed.
“People who are newly diagnosed see it as an opportunity to never become disabled,” said Goldman, of the National Multiple Sclerosis Society in Southern California. “I’m not sure that people who are very disabled think of it as a cure. Because there’s not a cure for MS, our greatest hope right now is arresting the disease or preventing it.”
Harland Green, a retired Beverly Hills lawyer, doesn’t assume that stem cells will reverse the 50-year course of multiple sclerosis in his wife, Melva. But the couple have closely followed the debate and fully support the research.
“By the time they do this research and it’s perfected and it gets through all the channels, I don’t see how it would be particularly beneficial for her,” said Green, 71. “But I do think it would be beneficial for a lot of other people and for mankind in general.
“The world is bigger than the two of us.”
For the present, though, Green spends much of his day caring for his wife--dressing, feeding and bathing her. Even so, Melva Green reads and accompanies her husband to religious services and theatrical performances in her electric wheelchair.
“We try to live as normal lives as possible within the limitations of the physical condition,” Harland Green said. “People with wheelchairs do not need to be hidden away.”
Caregivers like Green are often confronted with myriad tasks and have little time to track research developments, which are followed by patient groups such as the National Multiple Sclerosis Society and the Alzheimer’s Assn.
“For our families, they’re struggling day to day,” said Peter Braun, executive director of the Alzheimer’s Assn. of Los Angeles. “Caring for their loved one is a marathon. They’re looking for that silver bullet, but that silver bullet isn’t there.”
Davis Brown, a retired Navy aviator, sees himself in a fight against time. He was diagnosed with Parkinson’s disease in 1997, and now has an intermittent tremor in his right arm, along with difficulty writing and a lack of energy.
“I can envision, from what I’ve seen with others, that there’s going to be a progression in my disease unless there is some intervening force,” Brown said. “Just dealing with day-to-day things is going to occupy me full time. . . . That’s double incentive for trying to do as much as I can now.”
Brown, 66, leads a Parkinson’s support group for 175 people in Sonoma County in Northern California. The group spent two hours at a recent meeting discussing stem cell research.
“It really seems to have the best hope right now, the most promise,” Brown said. “To not pursue it as rapidly as possible . . . is really doing a great injustice not only to us Parkinsonians, but also to fellow sufferers in all these other diseases.”
Brown said he’s realistic about his chances of being helped by stem cells, adding, “I understand the time lines of research.”
Still, he said, “I’m going to fight it to the end and I want to get as much done as possible that can help me and those behind me.”
Former Pasadena Mayor Kathryn Nack said she’s interested in stem cell research more for her six children than for her husband, Donald, who has had Alzheimer’s since at least 1991 and is now in a convalescent hospital.
“I can’t look at them and they can’t look at each other without thinking that it could happen to them,” said Nack, 76, past president of the local Alzheimer’s Assn. board.
“My hope would be that whether it’s the stem cell research or something else, there will be research that can make a change in the dreadful outcome.”
That feeling is shared by Michael Helfant, Arianna’s father, who serves on the board of the Juvenile Diabetes Research Foundation of Los Angeles. Helfant, senior executive vice president of Miramax Film Corp., said he doesn’t want his daughter to live with diabetes.
“That’s a completely unacceptable result for my family, especially when you have an almost 12-year-old daughter whose future you dream about.”
