|
|
|
Thursday, November 4, 2010 6:52 PM
|
Ken Torbert
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'.
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.
http://www.emcsmithsfalls.ca/20101104/news/MS+patient+lobbying+government+to+approve+controversial+treatment
|
|