Multiple sclerosis treatment sparks debate
The death of a Canadian man, 35-year-old Mahir Mostic, who traveled to Costa Rica’s Clínica Bíblica to undergo a complicated medical treatment for multiple sclerosis (MS), known as liberation therapy, has sparked an international debate over whether the treatment is safe and effective.
Critics say liberation therapy, which involves an expansion of neck veins to increase the flow of blood from the brain, has not been sufficiently tested and should not be tried on patients. Yet many MS patients see the treatment as the best option to help alleviate symptoms from an extremely painful disease.
Clínica Bíblica Hospital began offering liberation therapy treatment in June and has since admitted more than 400 patients, all but a few of them from Canada, where the treatment is not yet approved by the government. Hospital officials say they have received thousands of queries and have had trouble keeping up with the demand.
“It was the first time that I had any hope,” said 41-year-old Kathy Siddall, referring to liberation therapy. Siddall was diagnosed with MS nearly 20 years ago.
“I was at the point of asking the doctor to amputate my leg, though I knew it wouldn’t do any good,” she said.
Siddall suffered bouts of extreme fatigue, lost use of her right hand, and said that her eyesight had deteriorated so much that her eyeglasses “were like Coke bottles.”
She was also one of the first patients to visit Costa Rica to have the procedure in June. For two weeks she divided her time between the hospital room where she was treated, post-procedure rehabilitation, and sightseeing.
For Siddall the treatment was a blessing. “I’ve been living inside a miracle… I can feel my fingertips and wiggle my toes. I am awake with a ton of energy … and I can read again.”
Mostic was also one of the first patients to visit Costa Rica to have liberation therapy. When he returned home to Ontario, Canada, he started experiencing complications and his health deteriorated. Canadian hospitals allegedly denied him treatment, so he returned to Costa Rica for follow-up care, and died on Oct. 19.
Mostic’s case was not a typical procedure, however. In most cases, patients undergoing the treatment receive angioplasty, which entails inserting surgical balloons into veins to widen them and increase the flow of blood from the brain and spinal cord.
However, in Mostic’s case, the angioplasty was unsuccessful and he allegedly asked his doctor to use stents to open the veins, something that vastly increases the risk of blood clotting, say medical experts.
Even Paolo Zamboni, the Italian doctor who invented liberation therapy, does not recommend using stents for the procedure, according to the National Multiple Sclerosis Society in the United States.
More than $3.4 million has gone into research since Zamboni’s study was published last year, according to the MS Society. While experts recommend putting treatment on hold until more studies are done, MS patients say they cannot wait.
“No one knows how long research would take,” said Irene McFetridge, 60, of Vancouver Island. “I don’t want to wait another ten years. It might be too late.”
McFetridge said she was at first skeptical about liberation therapy, but when she saw changes in her friends who had the procedure, she began to pay attention, and eventually decided to have the treatment herself.
Recovering at Costa Rica’s DoubleTree Hotel five days after having the surgery, McFetridge marveled at how she felt.
“I am not as stiff as I used to be,” she said. “I was so tight it was almost like I would crack. My fatigue has lifted and for the first time in a long time, my feet are warm.”
Shauna Langridge, 39, who had to quit her job as a preschool teacher because her symptoms worsened, described the same feeling of warmth returning to her feet after she had the procedure. Gone was the headache she had been living with for years. Now her balance is returning too.
“I have tried all the MS medication and it only made me feel worse. I had nothing to lose in trying something new,” she said.
But the treatment does not work for everyone. Some patients do not undergo any changes, a costly risk considering the medical trip to Costa Rica has about a $14,000 price tag.
The debate also focuses on why Canada has yet to authorize the procedure in hospitals. Some 55,000 to 75,000 Canadians have MS.
“It’s hard for me to understand why the government of Canada is rejecting this, when Canada has one of the highest concentrations of MS patients in the world,” Langridge said.
Canadian Health Minister Leona Aglukkaq said in a statement that she is waiting for more research before introducing clinical trials, and that will take some time.
Meanwhile, Costa Rica’s medical tourism market continues to grow, drawing more than 100,000 patients a year. And one unfortunate death will not dissuade the thousands who come here seeking relief from a horrible disease.
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