How far would you go for a cure?
‘He gave me hope’
Kilgore has never been one to give up hope easily. Trim and muscular, with long blonde hair and a broad, easy smile, she’s relentlessly positive, with a wide circle of friends and a close-knit family. She has spent her entire life competing, has won two college athletic scholarships and has never not been training for something. At Idaho State University at Pocatello, she channeled her physical drive into pole vaulting, aiming for a spot on the 2002 U.S. Olympic track-and-field team, a goal since she first saw Chariots of Fire as a kid. She couldn’t let go of that dream, even after the accident that broke her back and bent her spinal cord at a 90-degree angle. When she awoke two days later, doctors told her she was a paraplegic. “No way,” she said. “I’ll be up and pole vaulting in six months.”
After four months of rehab, Kilgore learned to master her wheelchair and also to stand, with braces on her calves, at the parallel bars. Within a week of leaving the hospital, she started riding horses again, still paralyzed but learning balance and control with her upper body alone. She returned to school the next semester. Soon, she leaned to monoski, using short poles with ski tips at the end for balance. She also started driving a car with hand controls and working out at the gym several times a week. “I really pushed myself,” she recalls. “I’ve always done that.” But Kilgore would never again pole-vault; she couldn’t manage a short stroll, much less a sprint to the line.
By the time a relative told her of Dr. Rader’s work, Kilgore’s faith in doctors was shaky.
“Everyone had such negative things to say to me,” Kilgore says. “I felt like they were playing God and determining my destiny.” But 10 minutes into a meeting with Dr. Rader, Kilgore was crying tears of joy over the possibilities he offered. “He gave me hope that I’d be able to walk again and that I could change people’s lives by showing what stem cells can do,” she recalls. “That gave me a purpose.”
Still, her new doctor was operating far off the grid. A one-time eating-disorder specialist who was once married to Sally Struthers, Dr. Rader runs his stem cell operation, known as Medra, Inc., from an office in Malibu but does the actual treatments at a clinic in the Dominican Republic, where American medical standards and regulatory agencies hold no sway. He says he has not yet published or applied for FDA approval because “if I were to publish now, paradoxically they would try to stop the work.” The doctor contends his clinic has helped more than 1,000 patients with conditions such as autism, leukemia, multiple sclerosis and aging, using fetal stem cell injections. He has compared the procedure to a bone marrow transplant, in which adult stem cells are used to treat blood diseases such as leukemia — only with fetal stem cells, patients don’t have to wait for a suitable match, don’t have to take immunosuppressant drugs and don’t run the risk of rejecting the donor cells.
Controversial research
If Dr. Rader’s claims of success are true, it would put him years ahead of the mainstream American scientific community, whose research has mostly been confined to lab animals and petri dishes. Until now, stem cells have had only limited use, mainly in marrow transplants. Before stem cell–based drugs or treatments can be developed for wider use, researchers first need to understand exactly how the cells work. Already, they’ve identified the two main types of stem cells: embryonic, which are derived from blastocysts, groups of cells formed five days after a woman’s egg is fertilized; and adult, which broadly describes any stem cell that is not embryonic. Embryonic cells are what scientists call undifferentiated, meaning they have not yet been assigned to a particular tissue or organ; they can become any of the 200 or so different cell types in the body. After several days, the stem cells in the embryo become increasingly specialized, first joining a particular system, such as the central nervous system, then becoming a certain type of stem cell within the system, like spinal cord neurons. Fetal stem cells, which researchers take from aborted fetuses, are assigned to an area of the body but are not yet narrowly defined. Stem cells from living humans are adult cells, already assigned to particular areas of the body.
In 1998, researcher James Thomson first isolated and cultured a human embryonic stem cell in a lab at the University of Wisconsin at Madison. Today, after a decade of work, scientists are only beginning to grasp how to direct embryonic cells to become certain types of tissue, such as spinal cord cells, which they can then study and manipulate. The next step is understanding how certain diseases relate to those cells — for example, how brain cells malfunction in Parkinson’s. In theory, if scientists can mimic diseases in a petri dish, they can then test new medications before they go to animal or human experiments, which would speed up the drug-approval process and make it safer and less expensive. “Even before you get treatment derived from stem cells, you have the research itself, which will allow for medical progress,” says David Magnus, Ph.D., director of the Stanford Center for Biomedical Ethics in California.
Opponents of research on embryos claim that adult stem cells are equally useful for studying diseases and cures. And when, last fall, Thomson and Japanese researcher Shinya Yamanaka announced they had made embryoniclike cells out of adult skin cells, some heralded the achievement as proof that embryonic research is unnecessary. But there is still much study needed before scientists know if the new cells hold the same promise as those taken from embryos. Thomson himself has publicly chided President Bush for slowing progress with his 2001 order that no new embryonic stem cell lines could be created for federally funded research. In a Washington Post op-ed last fall, Thomson said his was a “breakthrough achieved despite political restrictions,” not because of them.
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The president limited study to the 21 stem cell lines that already existed, but in actuality, only about a dozen are widely used. As a result, almost all the research on embryonic stem cells in the past seven years has come from the same 12 blastocysts, with the same set of genes, mutations and characteristics — the equivalent of using only 12 women to study how breast cancer occurs. Pera, of the Center for Stem Cell and Regenerative Medicine, says those lines have been useful in learning the basics of how to manipulate cells in a lab. But they are too narrow in scope to offer researchers the information needed to understand diseases and learn to treat them. “Let’s say 1 in 20 embryonic stem cell lines was really good at helping diabetes research,” he says. “We’d need to study hundreds to find them.” And Pera stresses that even Thomson’s discovery “was absolutely dependent on embryonic stem cell research. We need to have it.”
For now, leading researchers say that both adult and embryonic cells need to be given time in the lab. Several states, including California, New Jersey and New York, have begun funding research on embryos in the past few years. But Pera says most American biomedical research money still comes from the National Institutes of Health, especially in the early phases of study, before pharmaceutical companies step in. “Money drives research,” says Youngerman, of the Coalition for the Advancement of Medical Research. “We have the best scientific infrastructure in the world. But politics is tying the hands of progress.”
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