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Katie Zucker, 16, has sky blue eyes, wild curly hair and a dazzling smile. She is a champion equestrian and an A student. Her parents are doting, her friends devoted. So what's not to envy? Well, there's the small rectangular box attached to her belt that pumps insulin through a tube into her hip. To test her blood, she pricks her finger seven times a day. "It's scary," she says. "If your blood sugar goes too low, you could go into a coma." Sometimes at school her eyes swell, and she can't see the blackboard. She knows that her diabetes can result in kidney failure, amputation and blindness. But mostly, she says, "I try to think it won't affect me too much in the future."
If there's any hope for a cure for Zucker and more than 1 million other Americans with Type 1 diabetes, the most debilitating form of the disease, it may lie in a revolutionary new field of research based on manipulating human embryonic stem cells. These building blocks of life, when isolated in a microscopic cluster of cells, can morph into any kind of tissue. (So-called adult stem cells, which can be harvested without sacrificing embryos, can turn into only a few tissue types.) One day, scientists hope, the entire genetic makeup of a patient like Zucker could be transferred into a cloned human egg that can produce the insulin-producing cells her body lacks.
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But some religious groups believe the clumps of 100 to 200 cells from which embryonic stem cells are taken represent a potential human life as worthy of protection as any child's. Three years ago, President George W. Bush, under pressure from both sides, adopted a compromise that ended up choking off most federal research funds to the field. He said at the time that although the research offered "great promise" in saving lives, it could lead to "growing human beings for spare body parts."
Today a brush-fire challenge to Bush's stem-cell policy is spreading across the U.S., fueled by the frustration of such families as Zucker's who have allied themselves with patient activists for other diseases, major universities, several state legislatures and members of Congress. Last month 206 U.S. Representatives wrote to the President, calling on him to fund stem-cell research on spare embryos from a pool of some 400,000 stored in the freezers of in vitro fertilization clinics. These embryos, only a few days old and smaller than the head of a pin, will probably be discarded unless they are donated to science. Embryonic stem cells, the letter noted, can be used to treat "diseases that affect more than 100 million Americans, such as cancer, heart disease, diabetes, Parkinson's, Alzheimer's, multiple sclerosis, spinal cord injury ..." The signatories included two dozen pro-life Republicans.
Given the emotional nature of the debate, the Bush White House is unlikely to make any sudden moves before the November election. But in a startling rebellion against the federal biomedical establishment, several states are moving forcefully into the vacuum. California and New Jersey have passed laws specifically authorizing the cloning of human eggs to create stem cells (so-called therapeutic cloning), and the legislatures of seven other states, including Illinois and New York, are considering similar bills. This week New Jersey Governor James McGreevey, in a nod to the state's pharmaceutical industry, will inaugurate a $50 million stem-cell institute to be funded with state and private money. In California, activists last month submitted 1.1 million signatures — nearly twice as many as necessary — to launch a November ballot measure that would underwrite stem-cell research with $3 billion in state bonds over 10 years. The California funds would dwarf federal grants, which have stalled at about $17 million a year for human embryonic research since Bush restricted funding to a few dozen pre-existing stem-cell lines. Only 19 of those turned out to be available. Says Stanford Nobel prizewinner Paul Berg: "California is paving the way for a revolt in a lot of other states."
Meanwhile, universities are maneuvering for position, fearing that they could lose their brightest scientists to programs overseas. It was only six years ago that a biologist at the University of Wisconsin in Madison, James Thomson, isolated the first human stem cells from in vitro embryos. But in February, South Korean researchers stunned the scientific world by successfully harvesting stem cells from cloned human embryos — considered the most promising avenue for treating disease. A prestigious American investigator moved to Britain, where the research is encouraged. Now Stanford and Harvard hope to raise at least $100 million each for new stem-cell institutes. The universities of Wisconsin and Minnesota are expanding their labs, and in March an anonymous donor gave $25 million to the University of Texas to boost its Houston program.
Billions of dollars are at stake in the race for medical cures. California boasts half of the nation's biomedical research capacity and one-third of its biotech companies. The bond initiative, if it passes, would pay to build 12 to 15 new stem-cell research centers, a massive magnet for scientific talent. "California will be the center of stem-cell research for the world," predicts Palo Alto real estate developer Robert Klein, co-chairman of the initiative campaign. Klein, who has contributed $1.4 million of his money toward the effort, touts the economic benefits, forecasting $70 million in tax revenues from new jobs even before any cures are discovered. And if cures are found, the profits would accrue to California companies, along with substantial savings on the state's $114 billion annual health-care bill.
Finances, however, have little to do with Klein's passion for the measure. Like Janet and Jerry Zucker, Katie's parents and the initiative's other chief organizers, Klein is the father of a diabetic, Jordan, 13. In addition, his mother, 84, has Alzheimer's. Distraught at the federal cutoff of stem-cell research, Klein and the Zuckers, who are Los Angeles film producers, were brought together last year by the Juvenile Diabetes Research Foundation, one of the nation's most forceful disease-advocacy groups. They hired a clutch of sophisticated lawyers and political consultants to draft the measure and conduct polls. They enlisted allies from Alzheimer's, cystic fibrosis, Parkinson's and other disease-advocacy groups and spent $2.5 million gathering signatures for the initiative. Ten Nobel prizewinners have endorsed the measure, including David Baltimore, president of the California Institute of Technology, and Berg, who created the first recombinant DNA molecule. Behind the scenes, Silicon Valley venture capitalists are backing what is expected to be a $20 million campaign.
It will certainly be a celebrity-studded crusade. Last Saturday, the Zuckers and other Hollywood notables were hosts of a Beverly Hills tribute to Nancy Reagan that raised $2 million for stem-cell research. The former First Lady, who took up the cause after her husband developed Alzheimer's, had earlier written to President Bush in favor of federal funding. But this is the first time Mrs. Reagan has spoken out publicly on the issue. Proponents of the California initiative hope that advocacy by an icon of the conservative movement will help neutralize resistance to the November bond measure.
Opponents have barely begun to organize. "We're not Hollywood producers," says Richard Doerflinger, spokesman for the U.S. Conference of Catholic Bishops. "We don't have the money they do." Nonetheless, he says, pro-life groups will explain to voters that embryonic stem-cell cloning is "unpromising for cures" and offers "a gateway to all kinds of possible genetic engineering in humans." Although the California measure would initially limit research to embryos less than 12 days old, Doerflinger contends it could lead to "the exploitation of women as 'fetus farms.'" Such arguments have persuaded eight states, including Iowa, Michigan and Kansas, to restrict therapeutic-cloning research. More dramatically, the U.S. House passed legislation last year that would make cloning human cells a crime punishable by up to 10 years in prison. The bill stalled in the Senate, in part because of opposition from Utah Republican Orrin Hatch, who is antiabortion yet favors stem-cell research.
The initiative's backers plan to run a grass-roots operation urging the 5 million Californians who are members of disease-advocacy groups to e-mail friends and neighbors. A December poll commissioned by organizers showed that 85% of probable voters have a relative or close friend with one of five illnesses most likely to be a target of the research. The possibility of curing such afflictions as Alzheimer's and diabetes will be the focus of a multimillion-dollar statewide television campaign. "This is not a wedge issue," contends state senator Deborah Ortiz, who was attacked by Catholic Church officials, with little effect, for authoring the law to encourage stem-cell inquiry. "Ours will be a heartwarming message: that millions of people might be cured of diseases."
Whatever happens in California is likely to reverberate nationally. Already, breakthroughs in stem-cell science, published almost weekly in medical journals, are ratcheting up the stakes. If the initiative passes in the nation's largest state, "it will put tremendous pressure on the White House to re-evaluate its policy," predicts Daniel Perry, head of the Washington-based Coalition for the Advancement of Medical Research. If it doesn't, scientists claim, the work will move to such research-friendly countries as Israel, Singapore and even China.
No one is more aware of the issues than Katie Zucker. A couple of years ago, she visited Congress with her parents to lobby for stem-cell research, and she plans to help generate support for the initiative. "I have dreams and goals in life," she says, fingering her insulin pump. "What keeps me going is that people are working so hard to find a cure."
- Margot Roosevelt/Los Angeles