MS patients to rally for experimental treatment

People with multiple sclerosis will rally across Canada on Wednesday to demand access to a controversial procedure not currently available in Canada or covered by provincial health insurance policies.
The procedure, developed by Italian researcher Dr. Paolo Zamboni, involves angioplasty to help ease the flow in neck veins of blood from the brain to the heart. Zamboni believes narrowed or blocked veins force blood to move backwards or reflux back into the brain and spine, causing damage.
He's termed the condition chronic cerebrospinal venous insufficiency, or CCSVI.
The rallies are scheduled to take place in Halifax, Ottawa, Toronto, Regina, Edmonton, Vancouver, Victoria and elsewhere.
"The point of the rally is to demonstrate and voice our opinions about the way the government is handling the CCSVI situation," Andrew Katz, who has MS and uses a wheelchair, told CBC News in April. "It's not moving fast enough."
Many MS specialists say Zamboni's procedure is experimental at best and could be dangerous.
Studies are underway to show how common CCSVI is in MS patients, those with other neurological conditions and healthy people, as well as to explore its potential role as a major risk factor in MS.
But despite specialists' hesitation, some Canadian patients are travelling overseas, paying for tests and surgery out of their own pocket. Others are lobbying for the Canadian health-care system to cover the diagnostic tests to look for blocked veins in people with MS.
More than 20 Canadians traveled to a clinic in Poland between February and April for the treatment.

Meetings with MPs

The rallies also coincide with meetings between representatives of the MS Society of Canada and approximately 40 members of Parliament.
The representatives are hoping to secure commitments from the MPs on two major issues:

• Creating a nationwide income security program for people affected by MS that would replace what the society calls "the current hodgepodge of disability pensions, social assistance programs and tax credits, some of which cannibalize each other resulting in less money for people with disabilities.
• Increasing funding for health research with a focus on "innovative health research that can be translated rapidly into therapies that can benefit people with MS and other chronic conditions," including researching into CCSVI.

In November 2009, a researcher in Buffalo, N.Y., presented preliminary results from his own trials trying to confirm the link between blocked veins and MS.
Robert Zivadinov said a combination of being born with narrow veins in the neck or thorax, along with environmental and genetic factors such as vitamin D deficiency or exposure to the Epstein Barr virus may play a role in causing MS, an autoimmune disorder.