The doctor whose name has become synonymous with a controversial
treatment for multiple sclerosis is speaking out, saying it’s time for
the Canadian government to step in and offer a solution.
In a rare interview on Tuesday from the University of Ferrara in Italy,
Paolo Zamboni said he has been inundated with urgent pleas for help from
MS sufferers around the world and seen his name attached to dangerous
practices that have led to accidental deaths and dashed hopes. His
theory – which suggests that MS might be caused by blocked veins and
could be cured with a simple procedure known as an angioplasty – has
spawned an industry beyond his control, he said, and led him to conclude
that governments must take responsibility to prevent unsafe treatments
abroad by offering MS patients a safe procedure at home.
“The only right defence, in my opinion, is a clear action from the government,” Dr. Zamboni said.
It has been just one year since the Italian medical professor turned the
MS community on its head by suggesting that MS – long regarded as an
autoimmune disease – might be caused by chronic cerebro-spinal venous
insufficiency. Since then, hundreds of Canadians have sought out the
unproven “liberation” treatment overseas, including an Ontario man named
Mahir Mostic, who died last month after undergoing an angioplasty in a
Costa Rican clinic.
So far, the Canadian government has followed the recommendations of an
expert panel convened earlier this year to examine Dr. Zamboni’s theory.
The panel has advised against clinical trials of the procedure, opting
instead to fund research exploring the connection between blocked veins
and MS. If evidence emerges that supports the introduction of surgical
trials, said Tim Vail, a spokesperson for the Ministry of Health, the
ministry would “fully support and fund” them.
“I cannot understand why a country like Canada with a very good
public-health system refuses to support a treatment study on 500
people,” Dr. Zamboni said. “I think that is not a good thing. It’s not
the correct answer.”
Mr. Vail said the government will not be pressured into okaying a
potentially dangerous procedure. “Just because people are going to get
it anyway, that doesn’t make it safe,” he said. In response to Dr.
Zamboni’s statements, he said “we make our own decisions based on the
expert advice of Canadian doctors and Canadian researchers.”
MS is a debilitating disease that can affect vision, memory, hearing,
balance and mobility, and Dr. Zamboni said Canada’s step-by-step
approach to investigating his theory is taking too long, wasting time
that MS patients simply do not have.
His office receives hundreds of calls and e-mails every day from MS
patients around the world, many of whom beg for private consultations.
The University of Ferrara, where he works, has set up a dedicated
website to answer some of their questions, as well as a phone line that
is open for three hours each day to provide information in a variety of
languages.
The doctor himself works 12-hour days, attempting to balance his own research with the weight of his new-found following.
“All the patients have a personal story to tell. To manage this requires
a considerable amount of time each day,” he said. “And this is not a
good thing for progressing the research.”
It bothers him that his name is referenced in connection to Mr. Mostic’s
death, and procedures carried out in clinics around the world that do
not adhere to his theory or his advice.
A stent was used in Mr. Mostic’s angioplasty, a technique Dr. Zamboni
has spoken out against because the device used to hold veins open can
migrate and cause blood clots like the one that killed the Canadian
patient.
And he agrees that there is not enough evidence to suggest that
angioplasty offers any actual benefit when it comes to MS. But he also
knows that people will not stop seeking out the treatment, even if he
tells them to.
“Individuals, both physicians and patients, are completely free to do
what they want. I cannot control this,” he said. “I do not want to
control this.”
The only answers he can provide will come from research, he said.
Next month, he will begin a state-approved double-blinded trial which
will follow a large group of MS patients after they receive balloon
angioplasties. The study will involve approximately 15 centres in Italy,
and Dr. Zamboni hopes it will clear up any “residual doubt on the
so-called placebo effect.”
The patients will be observed for 15 months following the procedure,
their motor activity, balance and neural responses measured to see if
there has been any objective improvement in their condition. Dr. Zamboni
expects to have concrete findings in two years’ time.
In Canada, a similar clinical trial of the angioplasty procedure is
being planned in Saskatchewan, where provincial officials say they are
undeterred by Mr. Mostic’s death.
“The case you mention does not change our position,” said Kathy Young,
communications director for Premier Brad Wall. The Premier and Health
Minister Don McMorris “have said from the beginning that patient safety
comes first and that we will be led by experts, and that’s what we're
doing,” she said. The provincial government has earmarked $5-million for
clinical trials, which could begin as early as next spring, she said.
Dr. Zamboni hopes surgical trials like this one will be allowed to go
forward even in the absence of evidence that they will work.
“All these studies can be carried out contemporaneously and give us a
lot of information in a reduced time,” he said. “Because time is very
important for people.”
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