Dear Minister,
It is with much sadness that I write to you for a third time in a month.
A key problem is the climate associated with CCSVI. Patients sometimes feel intimidated and even threatened by their physicians. Many feel entirely marginalized.
I have repeatedly raised the lack of follow-up care; in fact, I first discussed the issue with the President of the Canadian Institutes of Health Research(CIHR), Dr. Beaudet, in the summer, and later, the fall of 2010.
On December 7th, 2010, I said to Dr. Beaudet during a meeting of the Subcommittee on Neurological Disease: “Thank you for clarifying that no patient will go without follow-up in this country, because they have been going without. I’m aware of one patient who was denied treatment by four different specialists. So thank you for that reassurance.”
On March 10th, 2011, I said to Dr. Beaudet during a meeting of the Health Committee: “Dr. Beaudet, on December 7 you kindly came to the neurological subcommittee and we talked about the importance of follow-up care. We’re still hearing stories that people are having difficulty getting follow-up care. You kindly said that you would do what you could to ensure its occurring. Could you table with the committee what actions you have taken to ensure follow-up care for MS patients who receive CCSVI treatment overseas?”
Later in March, 2011, I wrote to Dr. Beaudet: “I would like you to know that I received yet another email (March 18th, 2011) from a desperate Canadian who has been denied follow-up care, which I believe is unconscionable, unethical and clearly a breach of “do no harm”. Cancelling of appointments and mandatory tests, denial of treatment and threatening of patients is sadly continuing—I have reports almost weekly.”
Because the lack of follow-up care continued, I once again wrote to Dr. Beaudet in May, 2011. “On December 7th, 2010, Dr. Beaudet assured the Subcommittee on Neurological Disease …that no physician will refuse to see and treat them for complications of a treatment received abroad. … your first paragraph under follow-up care of your May 18th email says that CIHR is working closely with health professional organizations ‘to ensure that physicians and MS patients and their families are well informed of new developments of MS research’. This information is repeated on page 2 under ‘Ensuring proper health care to MS patients who underwent the Zamboni procedure’.
Ensuring ‘that MS patients and their families are well informed of new developments on MS research’ surely cannot be construed as follow-up care—particularly in light of Dr. Beaudet’s assurance on December 7th”.
As a result of the lack of follow-up care, my private members’ bill C-280, An Act to establish a National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI), called for ensuring. “… that proper health care is not refused to a person on the grounds that the person is seeking, or has obtained, the treatment for CCSVI outside Canada, whether or not that treatment is offered in Canada”.
I find it disturbing that highlights from the June 28th, 2011 Scientific Expert Working Group on Multiple Sclerosis detail that “media reports that have stated that MS patients who experience complications after CCSVI treatment are not being seen by Canadian doctors are not justified”. I must ask what patients/patient advocacy groups were interviewed, and what evidence was reviewed to come to this conclusion?
In my December 13th, 2011 open letter to Dr. Carrie and Dr. Leitch, and later, in my February 29th, 2012 letter to President Haggie of the Canadian Medical Association, I wrote: “follow-up care remains a problem today, and has not been adequately addressed. Although I have been asking since the summer of 2010 about follow-up care, patients are still being denied appointments and tests are being cancelled. Drivers’ licences are even being threatened if patients dare ask about pulling-out of drug trials.”
Senator Jane Cordy and I later met with President Haggie and his colleagues, who were completely unaware of the plight of returning Canadians treated for CCSVI abroad, and the lack of follow-up care in Canada.
Minister, a family in Saskatchewan is reeling from the death of a wife and mother. I ask that their grieving not be turned into a cautionary tale about travelling abroad for treatment for CCSVI, but rather, that Roxanne Garland’s memory be honoured with real action regarding follow-up care as her husband is requesting. I believe this issue speaks to one of the fundamental principles underpinning the health care system in our great country, namely that quality health care is a fundamental right of all Canadians. Given its importance and that fact that many Canadians are being unduly penalized, I respectfully request that you include follow-up care as an agenda item at your next Federal-Provincial-Territorial Ministers of Health conference. In addition, I ask that follow-up care be included in the next meeting of the Scientific Expert Working Group on Multiple Sclerosis, and that you commit to taking a public stand on the subject of advocating for follow-up care.