IVCC/CCSVI, radio et liens.

Publié le 8 juillet 2010 par Handi@dy

"Doc needs proof

Doc needs proof of MS treatment. Dr. Russell Price, a pathologist and interim chief of staff at RVH, says the hospital requires proof of the success of a treatment before extending “experimental” care to patients. Stan Howe photo

BARRIE - Despite promising findings for the treatment of multiple sclerosis (MS), RVH requires proof before extending “experimental” care, says its interim chief of staff.

“It’s been a difficult time for us,” said pathologist Dr. Russell Price, who is set to end his year-long term as the hospital’s acting top physician when newly-hired Dr. Martin Lees takes on the role. “We’re a hospital, we’re here to help people and we want to make them better. But you have to set aside emotion to make sure you’re doing safe and effective treatments.”

That’s a fundamental principal of medical care, he said, explaining the balance of providing proven patient treatments with the fiscal responsibility of publicly funded resources.

“I feel tremendous sympathy for these patients,” said Price, adding RVH’s policy is in line with other hospitals across the country. “But if we provided treatment and later found out it wasn’t effective, we’ve wasted time and resources and prevented access to our hospital to another patient for a treatment we know is effective.”

MS patients, anxious to halt or even reverse the progressive disease, have been seeking tests and angioplasties since Italian vascular surgeon Dr. Paolo Zamboni released the findings of his “liberation treatment” last November. His research found dangerous iron build-up in the brain as a result of malfunctioning neck and chest veins preventing proper blood drainage – a condition he called chronic cerebrospinal venous insufficiency (CCSVI.)

To test his theory, Zamboni unblocked his patients veins using an angioplasty – a standard and relatively simple procedure used to enhance blood flow in arteries.

The positive results have been publicized widely, with the number of interested patients quickly overwhelming the facilities available to treat them. Among the countries offering the treatment, only Kuwait is reported to offer it via a state-funded health-care system. All other treatment centres are private.

Mary-Pat Quilty had dedicated many non-working hours to researching treatments for her MS-afflicted husband David Carr, who was diagnosed three years ago and suffered increasingly debilitating symptoms.

She heard early on about Zamboni’s innovative protocol and was one of many who contacted the Italian to seek an appointment.

“He wasn’t taking any non-Italian patients at this point,” she said. She got Carr on a waiting list at Stanford University in California – an MS centre that has since suspended the treatment practice pending further studies citing “insufficient evidence of benefit and possible risk,” according to its website.

When Zamboni’s results were released, Barrie vascular surgeon Dr. Sandy McDonald was “keenly interested,” said Price. “So he provided the diagnostic imagery at his clinic and referred a small quantity of MS patients for the procedure.”

Regardless of the results of the angioplasties offered those five patients – who McDonald continues to follow up with, the RVH decided to stop offering the treatment.

“After the first five patients, both Dr. McDonald and myself and other senior administrative staff decided this is really within the realm of research, so going forward we decided not to do the procedure on MS patients until we were able to participate within a well-controlled and preferably multi-institutional research trial.”

After Carr was hospitalized with a particularly frightening episode – he couldn’t talk and had trouble reasoning, Quilty convinced doctors to “humour” her in ordering the vein scans during his hospital intake tests. Carr’s blocked veins and iron deposits were “exactly what Zamboni’s study had shown,” she said.

“When I got the results, obviously I couldn’t wait for Stanford.”

Instead, she contacted Dr. Marian Simka in Katowice, Poland, who was then still answering his own phone and email. He has since amassed an extensive medical team as well as a patient waiting list more than 3,000-people strong, said Quilty.

In April, the couple flew to Europe where they were picked up at the airport and taken to the hotel that had been arranged for them to await extensive tests.

A few days later, Carr was the first of six patients given the liberation treatment – his version involved stents being inserted when the basic balloon procedure failed to keep his veins open.

“His cognitive fogs disappeared almost immediately,” said Quilty, who estimates the entire journey cost approximately $15,000. “His memory has returned virtually 100 per cent and his fatigue about 80 per cent. Physically, that’s slower, but we’ve noticed things on a weekly or even monthly basis that are getting better.”

While such anecdotal evidence supports Zamboni’s theories, it is not proof, said Price, whose father had MS.

Paralleling the mainstreaming of the liberation treatment with the development of a new drug, he said the approval process typically takes years. In this case, current research is focusing on determining a link between MS and CCSVI, before any clinical trials involving treatment even get going.

“When you propose a treatment, you outline the risks and benefits,” Price said, allowing the patient the option of fully informed consent. “Until we know for sure, the risk is outweighing the benefit.”

For Quilty and Carr, opting for the experimental treatment has been worth facing the unknown.

“I have my husband back,” she said. “His quality of life is a lot better.”

mlawson@simcoe.com"