MS patient lobbying government to approve controversial treatment
Posted Nov 4, 2010 By Stacey Roy
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Stacey Roy, Smiths Falls EMC
Judy Butcher of the Smiths Falls area has joined other Canadians suffering with Multiple Sclerosis in lobbying the government to allow for surgery that has been used in Europe to reduce the symptoms of the disease. Petitions in support of this effort are available locally.
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EMC News - After 14 years of suffering with the effects of Multiple Sclerosis (MS), Smiths Falls area resident Judy Butcher is joining the fight for the right of Canadian MS patients to choose to participate in a controversial treatment known as 'The Liberation Treatment'.
Stacey Roy, Smiths Falls EMC
Smiths Falls area resident, Judy Butcher is passionate about lobbying the government to allow Multiple Sclerosis (MS) patients to have a venoplasty treatment. Butcher has been living with MS for the last 14 years.
The debate over when and if the Canadian government should allow doctors to perform a venoplasty (an intravenous ballooning procedure that attempts to restore normal blood flow in the veins) on MS patients has been raging since Dr. Paolo Zamboni of Italy published his findings on his study of Chronic Cerebrospinal Venous Insufficiency (CCSVI) in November 2009. This study showed a potential connection between CCSVI and MS. In this discussion, Butcher's opinion is very clear and comes from years of personal agony and discomfort at the hands of MS.
"It should be up to the people who have the disease if they want to take the risk or not," she added. "It's ridiculous for economic and compassionate reasons" not to allow the treatment.
The hypothesis is that the build-up of iron found in brain tissue of MS patients could be from red blood cells with iron leaking from the veins into the brain tissue. If doctors could repair the flow in the veins through venoplasty it is believed this would resolve this issue.
Butcher said the current medicine for MS costs $30,000 a year per patient when this surgery, if given to patients at the diagnosis of MS, is estimated to cost the Canadian government $1,500 per person. Predominately, Butcher appeals to the government's humanity in making its decision to allow venoplasty treatments on CCSVI patients with MS.
"MS virtually affects every system in your body," she said.
While this is taking place, the Canadian medical world is mobilizing its research staff to look at Dr. Zamboni's findings and attempt to replicate them in a large study. Over $2.4 million has been committed by the Multiple Sclerosis Society of Canada and the National MS Society (USA) to support seven new research projects focusing on CCSVI and its relationship to MS. However, individuals like Butcher say those with MS today can't wait for years of studying to be done.
"People are dying while waiting for treatment," Butcher added. "We can't wait for that. Let us be the experiment."
However, neurologists are concerned with some of Dr. Zamboni's published findings. Dr. Samuel Ludwin, a neuropathologist with 40 years of experience, supports Canada taking its time to thoroughly study Dr. Zamboni's procedures.
"The CCSVI is an extraordinarily interesting, novel idea . . .," Dr. Ludwin told the subcommittee May 11, 2010. "It offers many new ideas in terms of pathology, and Dr. McDonald has mentioned some, such as the iron, but this has to be really proven. It may turn out to be right, but it needs good study on both a clinical and an experimental ground."
MS JOURNEY
Since being diagnosed with MS in 1996 Butcher has gone through her own personal research on the subject and strongly feels the venoplasty given for those with CCSVI is her only hope to stop this condition in its tracks.
"I just want something that works," Butcher said.
When diagnosed, Butcher had three children between the ages of 5-11 years.
Today, she has spasticity - an extreme tightening, painful feeling from her knees down. Her left leg is difficult to use and can drag behind her and she must use a walker to move around in her home.
"My legs are just getting worse all the time," she said.
The local woman has worked with the medical community for many years in an effort to slow down or reduce the symptoms of MS. She has taken MS drugs copaxone and rebif with no positive results. She then attempted to be included in a dangerous treatment that would knock out her immune system with chemotherapy and then restart it using stem cells. She was denied participation. Her next move was to have surgery to implant a pump in her abdomen and back to control her spasticity. It didn't work so she had it removed. From the onset of her condition her right hand had difficulty functioning, but with her own physiotherapy thanks to her background as a trained nurse (RPN) she was able to regain use of it. Butcher has even given herself 18 bee stings every other day until 1998 in an effort to ward off further MS symptoms.
"They (the hive) froze up in the ice storm," Butcher said.
When asked if she felt any relief from this therapy, she replied she didn't get any worse while doing it. The only treatment that gave her relief of any type was a mild chemotherapy treatment given in eight doses over a two-year period, but this treatment can only be given once in a lifetime.
"The effects of it have worn off," Butcher said, adding this treatment left her with a fast pulse that she still deals with today.
LIBERATION TREATMENT
Hope came back into her world when in November 2009 she saw a W5 report on Dr. Zamboni's treatment and its potential benefits for MS patients. On Sept. 3 this year Butcher went to the Port Perry Imaging Centre (one of three facilities in Canada to perform imaging according to the Zamboni protocol) to be tested for CCSVI. In order to be considered positive two of five indicators must be present. Butcher had three, but is frustrated that Canadian doctors like Dr. Sandy McDonald, a cardiovascular surgeon in Barrie, Ontario are being held back from performing the venoplasty to MS patients.
"It can be done here, they just won't do it for MS patients," Butcher said.
Dr. McDonald presented to the Parliamentary Subcommittee on Neurological Disease on May 11, 2010 asking them to urge the government to allow MS patients to be treated. He proposes the same as Butcher - treating patients while concurrently completing scientific studies.
"We can formulate the controlled double-blind study and take as much time as we need to do it, but in the meantime we absolutely have to treat these patients on compassionate grounds, otherwise they're going to die with their disease, with a possible treatment at hand," Dr. McDonald said.
He notes that more doctors must be trained in imaging using Dr. Zamboni's technique. At the time of his presentation in May only three practicing Canadian doctors were trained. Butcher would like to see the MS Society and Canadian government funding this type of training.
"If common sense were to prevail the government would be ensuing that as many interventional radiologists and vascular surgeons as required learn the Zamboni protocol and procedure. As things are now, myself and many others have to wonder how much of the economy relies on keeping people sick," Butcher said.
Dr. McDonald further stated that approximately 750 procedures had been done world-wide with the only fatality occurring in Stanford University where stents were used on 40 patients.
"The problems that Dr. Drake encountered were stent problems," Dr. McDonald added. "And the other problem was a post-op stroke. . ."
While the debate rages on, Butcher has moved forward by booking an appointment at an Albany, New York facility to have the treatment done early in 2011 where she hopes the surgery will eliminate her spasticity and stop the disease from worsening.
"I just hope I haven't been left too long," Butcher said.
PETITION
Leeds-Grenville MP Gord Brown and MPP Steve Clark have voiced their support for this procedure and the newly created group CCSVI Brockville. The group had their first meeting on Oct. 6, 2010. They are open to anyone who needs their help or would like to help them and have welcomed members from Perth, Smiths Falls, South Mountain, Jasper, Brockville, North Augusta, Cardinal, Lansdowne, Maitland, Prescott, Ottawa and Kemptville.
Part of their work is to lobby the government to support the treatment being done on MS patients here in Canada. To this end a petition has been circulating and can be found at the drug store in Cornelia Court and 2Care4 Medical Ltd. on Cornelia Street West, Smiths Falls. Anyone who would like to add their support to the cause is welcome to sign it.
"They're going to be going to more places," Butcher said.
Anyone interested in learning more about the CCSVI Brockville group can contact Amy Preston at (613)-345-3565, email amypreston@sympatico.ca or Judy Butcher at 613-283-8444.
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