Yesterday I spoke on Senator Cordy’s Senate inquiry on access to angioplasty treatment for Canadians with multiple sclerosis and chronic cerebrospinal venous insufficiency, or CCSVI.

Multiple sclerosis, the MS Society of Canada tells us, is “an unpredictable, often disabling disease of the central nervous system which is composed of the brain and the spinal cord. The disease attacks the myelin, which is a protective covering wrapped around the nerves of the central nervous system… Symptoms of MS are unpredictable and vary greatly from person to person and from time to time in the same person.” These symptoms can include vision problems, loss of balance, loss of coordination, extreme fatigue, speech or memory failure, muscle stiffness, and paralysis.

Chronic cerebrospinal venous insufficiency, or CCSVI, also attacks the central nervous system. “CCSVI describes a theory in which portions of the venous system in the head and neck are narrowed or blocked and therefore unable to efficiently remove blood from the brain and spinal cord.”

In 2008, Dr. Paolo Zamboni of the University of Ferrara in Italy first published findings on an apparent association between multiple sclerosis and CCSVI. Since then, he has pioneered an angioplasty procedure correcting the abnormality in veins to the brain.

More than fifty countries around the world have implemented clinical trials for the CCSVI angioplasty treatment. Until last Friday, September 28, Canada was not one of them. I commend Minister Aghlukkaq on her announcement that the Canadian government will conduct clinical trials in British Columbia, Manitoba, and Quebec to determine the safety and efficacy of treatment for CCSVI. In a piece by Anne Kingston of Maclean’s, Dr. Michael Shannon, a former deputy surgeon general of Canada, said that the CCSVI clinical trials, [and I quote], “[have] the potential of providing very useful information that can be integrated into the bigger CCSVI research picture.”

As Dr. Shannon, an expert in setting up clinical trials, goes on to say, it is absolutely essential that these clinical trials adopt an unassailable design universally perceived as credible.

We have much still to learn from science, but also from one another and from each person’s unique experiences.

Roxane Garland died this past summer, on July 22, after a long battle with MS. She was thirty-seven years old.

Garland fought for her life, undergoing angioplasty treatment abroad, which provided some relief from her symptoms. She paid for procedure out of her own pocket.

When she returned home to Saskatchewan, however, she was unable to access follow up care—procedures and services available to all Canadians.

From a CBC News story dated August 1, 2012:

According to Michelle Walsh, a friend to Garland and an advocate for improved MS treatment, [Garland] was unable to get an appointment for a specialized scan— available in Saskatchewan—to evaluate her need for further treatment.

‘Anyone could pay to have this test done,’ Walsh explained to CBC News. ‘But not if you have MS and you have CCSVI. So they were being turned away.’

As Garland’s MS progressed, it became more difficult to manage. She contracted a bladder infection, among other complications. She was finally admitted to hospital where she died.

Her husband Vince Garland told CBC News he believes Saskatchewan doctors are reluctant to provide follow up care for the CCSVI procedure because it is relatively unknown.

‘They don’t want to get involved because a doctor somewhere else has done the surgery,’ Garland said. ‘And they don’t want to learn anything about it. They don’t want to know anything about it. This is something new.’

Walsh says Saskatchewan’s health system should support MS patients who need follow up care after CCSVI treatment.

She said it should not matter where they went for treatment or who paid for it.

‘If you went on a holiday and broke your leg, you wouldn’t be refused by a doctor,’ Walsh said. ‘So why are MS patients being treated like second class citizens here?’

While Saskatchewan will allow some MS patients to take part in clinical trials in New York, the government is only supporting follow-up treatment for those involved with the clinical trial. The federal government’s announcement about clinical trials does not guarantee the follow-up care that Canadians who seek treatment for CCSVI abroad deserve. Clinical trials are a good first step, but they will not facilitate follow-up care for the thousands of Canadian MS patients who have travelled abroad to receive treatment.

Roxane Garland’s obituary read, “Rocky would want people to keep on trying to get CCSVI treatment available in Canada and more importantly, the follow up care that she so desperately needed but could not attain.”

Senator Cordy’s private member’s bill, S-204, An act to Establish a National Strategy for Chronic Cerebrospinal Venous Insufficiency, is currently before the Social Affairs, Science and Technology committee. Even after the announcement of clinical trials, Bill S-204 remains incredibly important: it is essential that Canada adopt a comprehensive approach to healthcare for MS and CCSVI patients, and a national strategy is vital to this goal.

The bill would require the Minister of Health to convene a conference with the provincial and territorial ministers responsible for health in order to establish a national strategy that would:

a) Ensure the development of clinical trials CCSVI treatment and
b) Estimate the funds required for the conduct of clinical trials in Canada and the monitoring of those who underwent the angioplasty treatment and specify the appropriate source of funding.

In short, the bill calls on the Government of Canada to show leadership by ensuring all Canadians’ access to a comprehensive, quality healthcare system.

Our Canadian government has the opportunity to honour Canadian values by demonstrating leadership and by ensuring that desperation is met with compassion, that fear is met with love, and that the scourge of disease is met with respect for human dignity. I hope and pray that Canada will respond to Roxane Garland’s dying wish.