New Hope for MS Tour spokesperson Tim Donovan, who received the CCSVI treatment out of country, visited Lloydminster Sunday to tell his story and educate others. - Katie Ryan Photo
By Katie Ryan
Tim Donovan said he just turned one earlier this month, though his laugh lines indicate otherwise. He was on tour when he celebrated his one-year birthday on Aug. 5, 2010 – the day he received the chronic cerebrospinal venous insufficiency (CCSVI) treatment for multiple sclerosis.
“It’s my one-year angio-versary,” he said with a laugh, Sunday afternoon. “I am a year old now. I have my life back and you can tell I am excited.”
For four months, Donovan has been travelling across Canada as the spokesperson for the New Hope for Multiple Sclerosis Tour 2011, raising awareness and educating Canadians about the need for CCSVI treatment in the country now. The tour kicked off on May 9 in St. John’s, NL, and made its final stop in Lloydminster over the weekend at the Legacy Centre, where in front of more than 30 people – those with MS and those without, politicians and MS Society of Canada representatives – Donovan told his success story and shared his renewed hope.
“The goal is to get the CCSVI treatment available in Canada right now. Anything we make as part of the fundraising, which is not the main goal of the tour, is to go to get the CCSVI treatment in Canada now,” said Donovan, a municipal councillor and volunteer firefighter in Fredericton Junction, NB.
“If it was just me it would be one story, but it’s 15,000 to 20,000 people around the world who have gotten better – this is a huge story and it’s bigger than MS. They are finding that this procedure is helping with Parkinson’s (disease), dementia and now even autism.” Diagnosed 25 years ago with relapsing remitting MS, Donovan said prior to the CCSVI treatment, which he travelled to Albany, NY, to receive a year ago, his life was steadily disappearing.
“Twenty solid hours a day for five years I was in bed. I watched my grandchildren grow up on the side of my bed,” he said. “I would be in a nursing home today if it wasn’t for this procedure, and I am not alone in saying that. I am a whole lot better. That much better, that I want to tell everybody about it.”
Introduced by Italian doctor Paolo Zamboni, the procedure – also called liberation therapy – purports to unclog the neck veins of MS sufferers on the theory that their illness is caused by CCSVI. A condition associated with reduced blood drainage between the brain and heart, CCSVI can be treated by venous angioplasty, which Donovan travelled out of the country to receive since it is not approved for use in Canada.
Although the connection between CCSVI and MS is not yet fully understood, the results experienced by MS sufferers who have received this treatment are remarkable, said Donovan, adding he heard success stories on every stop of the New Hope for MS Tour.
“Every single one – everywhere across Canada this is happening,” he said.
In July, Alberta launched a study to track the experiences of Albertans who suffer from MS, in particular those who have had treatment for CCSVI, and earlier in June the federal government pledged funding for clinical trials. Last year Saskatchewan invested $5 million to fund clinical trials for the liberation procedure, which Lloydminster MLA Tim McMillan said is moving slower than he had hoped.
“It’s been very frustrating that even when we announced that we should do clinical trials – that was the next step – there were some stakeholders that one would think would be on side that weren’t,” said McMillan Sunday, adding a good friend of his has successfully had the treatment twice. “We see our citizens going around the world to countries that we may not recognize as some of the best health care providers in the world to get this treatment done, because it wasn’t provided here at home. We thought there was a responsibility for our government to step forward to do clinical trials. If it is a safe, effective treatment, then we should fund it. If it’s not, we should prove it to our citizens so they are not pursuing it.”
Despite the controversy that surrounds the CCSVI treatment – new Canadian research has documented numerous complications in MS patients who have travelled abroad to receive it – Donovan remains a staunch supporter of it.
“Seeing is believing,” he said. “Two-thirds of the people get better, one-third do not, but that doesn’t mean it doesn’t work. What medical procedure in Canada is 100 per cent? There’s the way I am looking at this.
“There are number of reasons why this is not available in Canada right now so let’s do our best to untie the hands of the medical community and the politicians to get this available,” he continued. “This can save the country tons of money, it can give quality of life back to thousands of people. What are we waiting for?”