The Corner Brook man, who suffers from the disease, said the advancements of this proposed treatment has given him hope of a better quality of life.
Italian Dr. Paolo Zamboni has been boasting success with multiple sclerosis patients by performing an operation to unblock restricted blood flow out of the brain. While, it has created some hope for many suffering from the nerve-wasting disease, it has been met with skepticism and, at least, caution by scientific experts, governments, and health agencies.
The Canadian Institute of Health Research held a news conference Tuesday to make recommendations on multiple sclerosis research priorities. Alain Beaudet said top North American scientists report there is not enough evidence to back the claims of the doctor. The association unanimously recommended not to back clinical trials at this stage.
The Multiple Sclerosis Society of Canada has said it wants to know more about any possible link between blocked veins and the disease before it backs Zamboni’s work.
Various provincial governments have taken different approaches to supporting clinical trials or not. This province’s government has expressed its support. Meanwhile, the federal government is also taking a wait-and-see approach, with respect to clinical trails. Instead, the national government will assemble a working group to study information coming out of studies of the treatment regime now underway.
“I think it is disgusting,” Keeping said. “They have finally come up with something that might help people with multiple sclerosis — I say might, because I haven’t heard any negative reports on it yet from people with MS — and the MS Society in particular is turning thumbs down on it.”
The longtime volunteer, who is vice-chair of the Corner Brook MS Society chapter, said people make an effort to get out in the community to raise funds and awareness for these types of advancements in treatment.
“All of a sudden, the people in charge are ignoring the people with MS completely,” he said.
Keeping said the clinical trials should be permitted to go ahead and those who want to participate should be signed up. Since the provincial governments has said it will support clinical treatments, he has been inquiring into what criteria is required of participants, but has not been receiving much information.
Having lived the last eight years of his life in a wheelchair, the 63-year-old said he would sign up for trials tomorrow if he could. In fact, he said if the treatment was offered in Canada, he would have it done as soon as possible regardless. He said, while the expense of going out of the country is not ideal, it is the extensive travel of going to a place like Poland that is nearly impossible for him.
“The most damage they can do is damage a vein,” he said. “The best they can do is give people like myself some quality of life back again.
“ ... I have heard of people who have had this thing done and they saw improvements in a matter of days. Whether that improvement lasts or not, that remains to be seen. If they don’t do the procedure, they will never know.”
Keeping said the reward far out weighs the risk.
“Maybe it gives a person like me a quality of life for another five or 10 years,” he said. “I don’t see where it will do any damage. If it does any damage, how much worst is it going to make my life.”
Ted Warren announced Wednesday he resigned as chairman of the St. John’s-Mount Pearl chapter of the MS Society. He objected to the national association’s cautionary stand on the new treatment.
Keeping expects more resignations.
“Personally, I think the Multiple Sclerosis Society has made a terrible mistake, and Ted Warren is the first,” he said. “He will not be the last. I would say it is going to come fast too.”
He also criticized the federal government for its stance.
“I think they should have given it more consideration and taken the people with MS into consideration before they made the announcement,” he said. “The people with MS have been looking forward to something like this for years. All the drugs they have is not curing MS. It might prevent relapses, but this one could improve the relapses so you won’t have anymore.”
