Procedures banned in U.S. offer disabled hope
Six years after a car accident left Jeni Rummelt paralyzed from the waist down, she is traveling to Moscow for a treatment aimed at helping her walk again.
Rummelt, 32, who is in Russia undergoing her sixth stem cell treatment, is one of a growing number of Americans who are seeking overseas medical procedures for injuries and diseases long regarded as untreatable.
As Michigan debates a controversial effort to loosen its ban on embryonic stem cell research, state residents are traveling to China, Portugal and other countries and spending thousands of dollars on treatments in hopes of reclaiming their lives. The stem cell procedures they are seeking do not have federal approval in the United States, which carefully scrutinizes treatments before approving them.
Many American medical experts urge caution about the treatments abroad, saying the procedures are often experimental and sometimes can make matters worse.
“There are always risks,” said Brian Sheridan, supervisor for the Center for Spinal Cord Injury at the Rehabilitation Institute of Michigan in Detroit. “You can end up with an adverse event. That’s the nature of some of these experimental procedures.”
Rummelt, who lives in Alto, near Grand Rapids, hasn’t experienced any adverse symptoms from the treatments, which involve injecting stem cells harvested from her own blood into her spine. Before she sought treatment, Rummelt lacked mobility and sensation in her trunk. Now she can contract a few muscles, sense hot and cold, and crawl.
“(These abilities) would have never come back without the stem cells,” said Rummelt, who spent $25,000 on the first procedure and $7,000 for each subsequent therapy. “It’s a slow progress. You know it’s not going to happen overnight, but it’s worth it.”
Mich. to vote on research bills
Stem cell research in the United States is embroiled in controversy, especially in Michigan, where researchers are attempting to further the study of embryonic stem cells. These cells are derived from unclaimed fertilized eggs in fertility clinics that are typically discarded as medical waste. They are highly prized because the cells can be developed into any type of tissue, while the uses for adult stem cells are limited.
Scientists and other advocates say embryonic stem cells offer hope to patients with incurable conditions such as spinal cord injuries, Parkinson’s and Lou Gehrig’s diseases. But opponents say it is immoral to kill a cell that could develop into a fetus and urge the use of adult stem cells, which show more promise without destroying life.
Many states have invested in embryonic stem cell research but Michigan lawmakers are attempting to change laws to allow scientists to develop new embryonic stem cell lines. A hearing on three bills was held three weeks ago before a House subcommittee and a vote is expected soon. If the bills fail to get Legislative approval, a ballot campaign may be launched.
Recent breakthroughs of scientists creating what appear to be embryonic stem cells with skin cells may calm the controversy.
But some local residents who suffer from injuries don’t want to wait for the U.S. to approve stem cell procedures because it could take years.
That’s why Chuck Burt of White Lake Township went to Beijing two years ago for an embryonic stem cell treatment in his spinal cord, which was injured in a car accident in 2000 that left him paralyzed from the waist down.
His $20,000 treatment involved the injection of stem cells above and below his injury. Before the procedure, Burt, 34, had no mobility at all in his lower extremities.
“Within an hour after the treatment, I could move my legs,” Burt said. “They are doing this all over the world except in the U.S. But I believe in about 10 years this will be a standard treatment.”
Cortney Hoffman, paralyzed from the midchest down after a car accident, went to Portugal in 2005 for a stem cell treatment that utilized her own stem cells.
Before she went, Hoffman, 21, needed help with everything in her daily life. Since the treatment, she has stood for the first time with braces, started walking with a trainer and has gained more mobility in her arms.
“It made me much more independent,” said Hoffman, who lives near Adrian. “I do my own hair, my own makeup. I could before, but I was shaky.”
If treatment for Parkinson’s doesn’t develop in the U.S. in the next year, Harbor Springs resident John Hover plans to go to China for a $15,000 stem cell treatment.
“I can barely write anymore and the tremors in my hand make it difficult for me to work on a computer,” said Hover, 57, who has gotten acupuncture treatments in China for his early-stage Parkinson’s. “They are treating the symptoms. They are not treating the disease.”
Doctors urge caution
It’s unclear how many people are actually going overseas for stem cell treatments. But doctors say people should be careful about traveling abroad for treatments that have not been fully studied and scrutinized by the scientific community.
“I can understand their motivation, their desperation but it’s not something I can recommend if the treatments have not been proven to be safe and effective,” said Mervin Yoder, an Indiana-based doctor who is president of the International Society for Hematology and Stem Cells.
Food and Drug Administration officials say procedures in the U.S. have been scrutinized to ensure they are safe and effective.
“Patients need to determine there has been the level of scrutiny,” when seeking treatments overseas, FDA spokeswoman Karen Riley said.
Not all people who travel abroad for stem cell procedures report improvements afterward.
Iowa resident Jake Lamberti had mixed results from a stem cell surgery on his injured spinal cord at a Portuguese hospital in February 2006. After his surgery, he was able to cut down on the number of pain pills he was taking, which allowed him to think more clearly. But he lost strength in his left arm.
“Bad things can happen,” said Lamberti, 28.
Regardless of the risks, some people say they are willing to take them because they see no alternatives.
“With any surgery there’s risks,” said Billy Vickers, 24, who went to Portugal in 2004 for a stem cell treatment. “There’s a risk of driving to work. For me, it wasn’t a choice. This country doesn’t provide us with a way to get better so I am going to seek it elsewhere.”
Kim Kozlowski / The Detroit News
You can reach Kim Kozlowski at (313) 222-2024