Wednesday, December 2, 2009
Stem cell research offers great promise for people with incurable diseases. But promises won't help those who don't have time to wait for those medical breakthroughs. A man, dying of Lou Gehrig's disease, has gone out of the country in search of treatment.
SAN DIEGO Stem cell research offers great promise for people with incurable diseases. But promises won't help those who don't have time to wait for those medical breakthroughs. A man, dying of Lou Gehrig's disease, has gone out of the country in search of treatment.
Shane FitzMaurice is a handsome 53-year-old whose eyes sparkle when he smiles. He's a successful small business owner. He also has ALS, Lou Gehrig's disease, which forces him to wear a breathing tube attached to his nose and has made him physically helpless.
"In 2004 I was still playing tennis," he said. "Now I can't walk or use my hands or arms."
"Do they expect you will die soon?" I asked.
"Nobody ever gives you an exit date. But my own prognosis is I've got a year or two left," said FitzMaurice.
ALS is a disease that causes the body's motor neurons to degenerate and die. People with the disease typically die within five years of diagnosis. There is no cure and no proven way to slow the progression of ALS. Shane FitzMaurice shares his pain with a wife and four children.
"One of the things that Frankie, who is the 3-year-old, said was, 'Papa, you're getting old, right?' I said 'I guess so, Frankie. Why do you think I'm getting old.' He said, 'Because you're in a wheelchair and you can't walk.' So he was processing the information in his own way," said FitzMaurice.
FitzMaurice said the desire to do something lead him and his wife to a clinic in Monterrey, Mexico, which performs stem cell treatments that aren't permitted in the U.S. Stem cells are immature cells that can, theoretically, be turned into any tissue in the body. FitzMaurice said the clinic got stem cells from his blood that were then injected into his brain. This was done in hopes the stem cells would turn into motor neurons and stop or slow his disease. Fitzmaurice said he paid the clinic $18,000 for the treatment.
"Because there's not a lot of hope out there," he said. "There's not a lot of procedures anywhere in the world that help. And of all our searching, of all our homework, this one seemed the most likely."
Jeanne Loring is director of the Center for Regenerative Medicine at Scripps Research Institute in San Diego. She says she no longer answers her office phone.
"I found that about 50 percent of the calls I got were from people who were absolutely desperate about getting stem cell therapies," said Loring. "And one thing I didn't want to do is pick up the phone, and the only thing I could say is that I can explain all this to you, but I can't send you to any clinics. Because we're not ready yet."
Loring isn't familiar with the clinic FitzMaurice visited. But she's skeptical of it. She says stem cells from blood and bone marrow can't be transformed the way that embryonic stem cells can be, unless they are reprogrammed. And even if motor neurons can be made from stem cells in a lab, medical science still doesn't know how to make them do what they need to do in the human body. She says medical tourism, as it applies to stem cell therapies, has given rise to many dishonest operations.
"There was a clinic in Beijing that promised to cure Alzheimer's disease, autism, ALS, blindness -- I'm just going in alphabetical order here," said Loring.
She said the stem cell treatments overseas may not be dangerous. But she's offended by clinics that financially prey on desperate people with incurable diseases. Shane FitzMaurice said his trip to Monterrey made him feel better, at least temporarily, though he says he knows about the placebo effect. Was it worth the money he paid?
"Well, I've done something positive for myself. So yes," said FitzMaurice.
Hope keeps people alive, and it's something that's in short supply for people with terminal illnesses. Jeanne Loring at Scripps says research funded by the State of California will lead to clinical trials of stem cell treatments for Lou Gehrig's disease within four years. But that will probability be too late for Shane FitzMaurice.