Andrew Dahlen, a multiple sclerosis patient, speaks to media after a press conference in Saskatoon, Sask., Thursday, August 16, 2012. Dahlen was the first Saskatchewan resident to fly to Albany, New York to be apart of a clinical trial of Chronic-Spinal Venous Insufficiency (CCSVI) to relieve symptoms of MS. THE CANADIAN PRESS/Liam Richards

Canadians who travel abroad for medical treatments, including cosmetic procedures, are entitled to receive follow-up care at home. The experiences of people who have travelled offshore for treatment for chronic cerebrospinal venous insufficiency (CCSVI) indicate that this patient population is facing systematic discrimination.

This situation has persisted despite statements from the Canadian Institutes for Health Research (CIHR) and the Scientific Expert Working Group (SEWG) on CCSVI, and raises questions about the relationship between the Canadian Medical Association (CMA) and the CIHR, and their respective roles in affecting both provincial and federal health care policy.

In September, 2011, I introduced my private member’s bill C-280 calling for a national CCSVI strategy that includes access to aftercare for patients who had travelled abroad for treatment. This was necessary because many treated offshore for CCSVI who required follow-up care in Canada were being turned away from emergency departments — even told to return to the clinic where they were treated, which usually entails air travel. After two readings, the bill was defeated on February 29, 2012.

Access to information searches reveal that as early as December 21, 2010, CIHR President Alain Beaudet was to have met then-CMA President Jeffrey Turnbull to discuss “the possibility of the CMA producing a position statement regarding patient access to physicians for those who have received the Zamboni procedure”. Additionally, “CIHR would be willing to provide the CMA with any necessary support in order to produce this statement”.

Yet on February 27th, 2012, only two days before the defeat of my private member’s bill, I received a first correspondence from the then-president of the CMA, Dr. John Haggie, who wrote on behalf of his 76,000 members to oppose the bill.

This letter represented the CMA’s first public objection to the bill, even though Dr. Haggie had ample opportunity to raise concerns before both a House and Senate committee.

Senator Jane Cordy and I later met with President Haggie and his colleagues, who appeared completely unaware of the plight of returning Canadians treated for CCSVI abroad, and the lack of follow-up care in Canada. He also was unaware of the fact MS patients continue to be denied appointments and that critical medical tests were being cancelled.

Additionally, he was unaware that patients had been told that their drivers’ licenses would be revoked if they inquired about pulling out of clinical trials for new MS drugs.

While the government dropped the ball on follow-up care, the family of Roxanne Garland in Saskatchewan was left reeling from her death this past summer after she struggled to obtain follow-up care.

Dr. Alain Beaudet wrote to the Colleges of Physicians with this instruction on February 29, 2012: “MS patients who have received a venous procedure abroad should be reassured that they will be continued to be cared for by their physicians and/or regular MS specialists as any other patients.”

Does the minister of health stand by this directive? Or is the government’s position that follow-up care is primarily the responsibility of provincial and territorial governments to ensure that no Canadian is denied post-treatment and follow-up care (ATIP)? If the latter, what role will the federal government have if patients are being denied follow-up care by a province or territory?

Many of the estimated 75,000 Canadians who struggle with multiple sclerosis — an incurable condition — are obliged to travel out of the country for treatment, yet they continue to be unduly penalized and put at serious risk by our world-class medical system. I once again call upon the minister of health to be transparent and explicit in her position on this issue.

Her government says it supports the Canada Health Act (CHA), which ensures patients have access to medically necessary care when they need it under the five principles. If a province denies access to that care, the province is in contravention of the CHA.

I also call upon the minister to include follow-up care as an agenda item at the next Federal-Provincial-Territorial Ministers of Health conference, and to commit to taking a public stand on the subject by advocating for follow-up care, something CIHR itself saw as a real issue over two years ago.

This issue of follow-up care speaks to one of the central principles underpinning the health care system in our great country — that quality health care is a fundamental right of all Canadians. Canadians with MS have a right to something much better than the muddled status quo.

Kirsty Duncan is a Liberal member of parliament (Etobicoke North) and critic for the Environment. She has a Ph.D. in geography (University of Edinburgh, 1992) and has taught meteorology, climatology, and climate change at the University of Windsor, corporate social responsibility and medical geography at the University of Toronto and global environmental processes at Royal Roads University. She served on the Intergovernmental Panel on Climate Change, an organization that won the 2007 Nobel Prize with Al Gore and is the author of Hunting the 1918 Flu: One Scientist’s Search for a Killer Virus (University of Toronto Press, 2003), and Environment and Health: Protecting our Common Future (2008).

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