Elizabeth Alley of Nashville and Dawn Gusty of Kingston Springs could be considered medical tourists, empowered health consumers, desperate individuals or impatient patients.
Whatever you call them, neither regrets the decision to travel abroad for stem cell treatments that they could not get in the United States - even though they did not get the results for which they had hoped.
Three years after traveling to China, Alley still uses a wheelchair because of a spinal cord injury. Gusty, who received her treatments in Mexico last year, has not been able to cast away the walker that multiple sclerosis has forced her to use.
Although their mobility is no better, the women have noticed improvements with nerve sensation and pain. But it will take the U.S. Food and Drug Administration several years to determine whether to approve stem cell therapy as a treatment for nerve regeneration.
After a decade of ethical debate, the FDA this year allowed the first clinical trial of human embryonic stem cells as a treatment for spinal cord injuries. California-based Geron Corp. enrolled its first patient in the study in October.
"That is the only currently FDA-approved trial utilizing stem cells in the U.S.," said Dr. Mark A. Magnuson, a professor of cell and developmental biology at Vanderbilt University, who is involved in stem cell research.
Neither Alley nor Gusty received embryonic stem cells, but they still had to go abroad for their procedures. Gusty had stem cells taken from the tibia bone in her leg, processed and then infused back into her body. Alley received stem cells taken from umbilical cords.
Although Magnuson strongly cautions against patients traveling abroad to receive treatments that the FDA has not approved for safety or effectiveness, he shares the hope and understands the frustration of people searching for stem-cell treatments. His research involves learning how to convert embryonic stem cells into pancreatic beta cells for use in treating diabetes.
"There's been a decade of impediments to developing some of these therapies in the U.S.," he said. "This has affected us. Just recently, on Aug. 29, we had the whole issue of a federal judge declaring our research illegal. That got overturned, but it still has a damaging effect."
Besides the political and ethical debates, there are also popular misconceptions. Stem cells are not a miracle cure, Magnuson said.
"None of this can be generalized," he said. "Stem cell therapy is not one thing. Stem cell therapy will in time be 100 different things."
Study's scope limited Alley is not eligible for the Geron therapy. It is limited to people who have suffered spinal cord injuries within seven to 14 days.
"I'm extremely hopeful for this trial," Alley said. "I know the parameters for it are very, very strict right now. I'm hopeful that in the next 10 years or so, a little boy 14 years old playing football and getting his neck broken won't have to be in a wheelchair for the rest of his life."Â
The National Multiple Sclerosis Society said in a news release that the study could have future implications for MS. Future is the key word because the clinical trial is a Phase I study, the very first stage of the process when a potential treatment is checked for safety.
Gusty and Alley said they would continue getting stem cell treatments if they were easily available and did not require traveling abroad.
"I no longer have any nerve pain at all," Gusty said. "That was something I dealt with every night and really couldn't sleep because of that."
She noticed the difference after her first treatment in June. However, she admits to having experienced depression when a second treatment in October did not improve her mobility.
"This was a very spiritual process for me," Gusty said. "I had to realize I was putting conditions on God. I was putting conditions in my prayers, saying, 'If you do this for me, I will do this.' "
MS treatment lacking
Gusty is not taking any medications currently, but she is taking vitamin supplements.
"There really is not a treatment out there that has shown any benefit for primary progressive MS," she said. "The one treatment my doctor did put me on at one time didn't really make a difference at all."
Alley is happy that she can experience some pain and discomfort. Her nerve sensation has improved to the point that she can detect discomfort from shoes and tell if she is hot or cold.
"Before I went for the treatments, I could sit outside in the hot, hot weather all day before I realized I was hot," she said. "Now, I can go outside and in 10 minutes - like normal people - I realize that I'm hot and need to go inside."
She received six stem cell treatments in China over a six-week period. Although Alley still must use a wheelchair, she has become more independent. She no longer lives with her parents, has a part-time job and is attending college.
She did not expect stem cell treatments to completely heal her spinal cord injury, but she was hoping to have some movement restored.
"Just because I didn't get all the good benefits that I wanted from it, for me it was a good closure," she said. "It helped me with my healing process. I was always thinking about when I get my stem cells. Now that I've got them, it's like, OK, I've got them and this is what they did. This is my life now."
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