It was an exciting day in Ottawa. The parliamentary Subcommittee on Neurological Disease met today and had presentations by CCSVI Freedom Fighters, including two people have been liberated, the doctor who was instrumental in their procedures and the man who's trying to perfect the testing.
Despite the brevity - 5 minute limits were given to each speaker - a great deal of information was packed into each speakers' presentation.
E. Mark Haacke, a physicist and MRI specialist was the first witness. He announced that he is establishing the International Society for Neuro-Vascular Disease, a hybrid that will focus on MS and other blood-brain barrier diseases such as ALS and Alzheimers.
Haacke explained that he's worked on a theory between MS and the small veins in the brain for the past 4 years and in September, 2009, he presented his independent work to Dr. Paulo Zamboni, the Italian surgeon who first published his theory on chronic cerebralspinal vascular insufficiency, or CCSVI. Haacke says that since Zamboni first developed his protocol, over 1,000 patients have been imaged and over 500 treated for CCSVI to date, and that some of the people who have been treated do not show obvious signs of improvement after the treatment, but many of them do. Some of them recover their energy, their continence, their motor capabilities.
Haacke says the wait-and-see attitude of neurologists "is simply wrong. The evidence for venous abnormalities is simply overwhelming, and the main goal at this time is not 'should we get funding to continue to pursue this point but rather to get funding to subcatagorize the different sources of CCSVI...We need a subclassification to understand why some people might recover from surgery better than others. To get this information, we need to collect information if not in the hundreds but in the thousands."
"Patients," he continues, "need to know what the lesion content, the iron content and the vascular status in their brain, neck and spine is before they have their surgery in order to monitor how things change after their surgery."
"The questions of the highest import are whether the patient stabilizes or not, and whether the patient gets better and if the lesions and abnormalities tend to subside," Haacke said.
"So again, the question becomes 'how many is enough' and the answer depends critically on the question." He explains that CCSVI is more than blockages in the veins, but in the valves and caused because of bones, in fact many many things that can cause CCSVI. "In order to understand why this treatment works for some and not other people, you have to understand where the problem is. If there are 10 sources of CCSVI and 100 cases are needed for each type of representation of vascular abnormality, then a multivariable study of about a thousand cases would be required. But statistically, in most cases, this would be overkill. In any case, it would behoeve us to create a national MS database in Canada, from both an ultrasound and MR perspective." He goes on to explain how five Cemters of Excellence spread throughout Canada could be used to collect this information making them cost-effective and a hundred times more effective than individual studies.
"With a simple, collaborative effort, we can collect in months what it would take years," Haacke says.
The current wait-and-see attitudes, he says, isn't just a scientific issue but a moral issue. "It is akin to watching someone drown while testing a new flotation device, while all previous ones only sink several hours later. Perhaps this device won't work perfectly at the beginning either," Haacke says, "but if it keeps people afloat rather than watching someone drown, then this testing should be done to save someone's life."
"Are double-blinded studies the testing that should be done to save someone's life?" he asks. "Who is to say that the nay-sayers of today will design the right kind of double-blinded study for the MS population? We don't need strong data to show, at first, what kinds of abnormalities are present, and second, to start following these patients immediately. I would say we should allow to have patients have their data retrospectively reviewed, even if they follow a clinical route where data is not usually used for research. In fact, a retrospective analysis of data is allowed when appropriately presented to Human Studies Committees."
"I think it is extremely important that the Canadian government look at what has been acquired to date and consider imaging MS patients and treating MS patients on a compassionate basis," he concludes.
Dr. Sandy MacDonald, a Barrie, Ontario doctor, began his testimony by pointing out Rebecca Cooney in the audience, explaining that she walked in, without her wheelchair, after having venoplasty performed last week in Albany, NY last week. That was greeted with cheers and a round of applause.
He explained that CCSVI is real, easily treatable, treatable at low cost and low risk to the patient. He doesn't believe that people like Cooney should have to travel to New York or Poland or anywhere else in the world to get it done, with great expense, when they could get it done at home for much cheaper.
He graphically demonstrated the video of venograms that were performed on two his patients, Steve Garvie and Liane Webb, to show normal vein structures compared to the abnormal structures of their veins. Garvie and Webb later gave testimonies of how their CCSVI treatments have changed their lives and how this treatment should become available to all.
Liane Webb, who lived with MS for 20 years, witnessed that MS effects not just the person, but the entire family. She attested that the treatment was painless, her fatigue is gone and life after her CCSVI treatment includes a full time job, rounds of golf each week -- without a cart -- horseback riding and in the four months since her treatment, she's not had a single attack. She described, with a voice wavering at times, holding back tears, how she now has the energy to go for walks and bike rides with her family once again.
"I am living again," Webb says. "I want to try and do so many things now, whereas before, I was so exhausted I couldn't even think about it."
"I can't imagine simply asking someone to put up with the blockage I had. I ask that this Committee do everything possible to remove all possible obstacles for all Canadian patients diagnosed with CCSVI to receive this treatment," Webb says.
Fifty-three-year-old Garvie came close to tears explaining how dependent he was on government-assistance and outsiders to care for him until he was treated for CCSVI and regained his independence.
"People have pride. I had none. My life was taken away from me. These people (the assisted caregivers) gave it back," Garvie said. "I don't know how you put a weight on that."
"I couldn't share my love with the person that I loved because I couldn't.That was totally taken away from me with MS, I was totally disfunctional." Garvie explained that he'd taken antidepressants to "help me get through my life" and tried to commit suicide twice so his three daughters wouldn't have to go through his MS decline with him.
"Pride does that to people. I've been six months fixed.and in those six months, I'd like to know how many people have died needlessly, how many people have become more disabled," he said.
"There's no need. None."
Garvie explained his route to his CCSVI treatment, from the W5 program to his GP in Barrie, Ontario, to Dr. MacDonald and his Doppler scan to show his jugulars were unquestionably blocked.
"It's not an operation. It's a 45 minute treatment.Painless. Live giving. They gave my life back to me," Garvie said, choking back tears. "They're my heroes.I think you should let them be heroes for everybody else."
Garvie said his left hand was useless and numb before the treatment, but when on the operating table, he felt life in it again. "I shook the nurse's hand," he recalled. "My hand works! I can lift my left leg! I couldn't believe it.I went into this procedure thinking I could stop the progression. I'd learned to deal with the other things: I'd got my mind straight on the suicide, I didn't feel like I was worth a whole lot. not with what I was going through, I was getting worse every day, every month, every minute. Secondary Progressive does that to you, so does Primary. You don't get better, you get worse. And that's all you have to look forward to."
"They say that this does not help people with Secondary Progressive. I beg to differ. Would you please look at the evidence? I'm right here."
Since his CCSVI treatment, he's no longer in care. He takes care of himself, washes his dishes, cooks his own dinners.
"I can live my life!"
To the Committee, Garvie's plea is simple: Please take the obstacles out of the way. Everybody deserves to have a life, and with a simple angioplasty, that can be done.
Committee panelist Dr. Kirsty Duncan, the Liberal MP for Etobicoke North was next, and began her question period by reading from a letter from a doctor who had just returned from his CCSVI treatment in Poland. In reading parts of the letter, Duncan became emotional as well as she recounted that he'd met many Canadians there who were treated with positive results, extatic and grateful to have an improvement in their quality of life. The letter explained that two-thirds of the people going to Poland for treatment are Canadians, how there are 2,000 people on their waiting list.
"The argument from neurologists is that we need more studies done in Canada," Duncan read, "The only way you do a study is by treating people and a follow-up. Neurologists should have no input into treating this: they are not vascular surgeons."
The letter goes on to say that improvements to quality of life has no pricetag. We will only know if the positive results from this endovascular surgery will last after months and years of follow-up. There is no problem paying for angioplasty for arterial stenosis or surgery for corroded arterial stenosis. "Why the discrimination for venous stenosis?"
On being asked about ethical dilemmas in treating MS patients for CCSVI, MacDonald said he would have an ethical dilemma as a physician for not treating people with CCSVI. "There's good anecdotal evidence to show that people with CCSVI do well with treatment."
MacDonald was also by Conservative Patrick Brown, MP for Barrie, asked about barriers to treatment. He asked if MacDonald thought there had been a directive from the Provincial Ministries of Health not to do these procedures. MacDonald said "your guess is as good as mine". He was also asked if he knew why the Multiple Sclerosis Society of Canada has a wait-and-see approach. MacDonald says "Again, it's ike waiting for an electrician to work on a plumbing problem. It makes no sense."
The Committee will reconvene on June 15th and, if I understood correctly, both Drs. Paolo Zamboni and Marian Simka will be asked to present.