People with MS denied basic human rights, reader says - Rachel Proulx

The purpose of this message is to bring the point home that the controversial CCSVI treatment, also known as liberation treatment, is not a cure for multiple sclerosis (MS), but indeed a treatment for people who have MS.

Clinical trials and research are good things, and should run their course in five to 10 years. We anxiously await the findings, as the data will provide statistics.

Realistically though, people who suffer from MS are running out of time. Did you know that people with MS are deprived of a simple procedure available to every other Canadian without a second thought?

Every single other Canadian found to suffer from a venous abnormality that is preventing blood from draining properly from an organ can be treated, but the treatment is denied to people with MS.

The irony is that this procedure, used to correct the abnormal cerebrospinal venous flow, appears quite clearly to have helped many with MS that received the treatment abroad.

Did you know that Canada has one of the highest rates of people living with MS in the world? It is estimated that 21,000 to 29,000 Ontarians live with MS.

Northern Ontario is a hot spot for MS. One in five people here have MS, versus one in seven in all of Ontario.

Looks like the federal and Ontario governments have taken away the basic human rights of people with MS by denying medical treatment.

The diagnosis of MS precludes patients from the CCSVI procedure. What disease will be singled out next?

In November 2009 you and I and the world heard the news that Dr. Paolo Zamboni had discovered an experimental treatment for MS.

That news resonated loud and clear that there was hope where none had existed for so many of us living with MS.

Many MSers, their families, friends and supporters flooded the offices of the MS Society of Canada demanding that CCSVI treatments be made available immediately, as clinical trials take time and MS sufferers are running out time.

On August 26, 2010, a panel of 23 “medical specialists” and “three observers” gathered in the Ottawa offices of the Canadian Institute of Health Research (CIHR).

The eight-hour meeting yielded the unanimous decision that it would be “premature” for the federal government to fund clinical trials for the controversial multiple sclerosis treatment pioneered by Zamboni, formerly a vascular surgeon.

Six days later, federal Health Minister Leona Aglukkaq announced that her government would accept the CIHR’s recommendation, calling it “the most prudent course of action at this time,” citing concern for patients’ safety.

The federal government, via CIHR, established an expert scientific working panel on CCSVI to monitor and analyze the preliminary findings of the CCSVI research funded by the MS Society and its American counterpart.

These decisions did not deter MS sufferers, who sought and continue to seek the CCSVI treatment outside of Canada, spending thousands of dollars in the hope of finding some relief from the devastating effects of living with MS.

In 2011, the government announced the development of a national MS monitoring system that will identify disease patterns and track treatments and long-term outcomes for people living with MS.

On March 1, 2011 the government of Ontario established an expert advisory group to provide advice to physicians on follow-up care and treatment of Ontarians with MS who have undergone the CCSVI procedure in another country.

On June 29, the federal government announced that it will fund Phase I/II level clinical trials on CCSVI and MS. The CIHR’s scientific expert working group unanimously recommended the design and launch of a therapeutic clinical trial.

So you ask, what’s the urgency? Why the rush? The simple and most direct answer is ... walk a mile in my shoes. What if one day you wake up and something is terribly wrong?

You don’t have any balance to put on your work boots to go to work? You are scared to pick up and hold your baby because your arms and legs spasm out of control without warning?

What if you are always so tired, that you have little or no energy to work or take care of your family?

If you are diagnosed with MS, a neurologist in an attempt to comfort you, might say, chances are you won’t die from MS (few do). What they don’t tell you is that MS comes with a life sentence without parole.

The CCSVI treatment offers hope of getting back some quality of life.

MS sufferers are predestined to a slow or rapid deterioration of every aspect of their lives. So, what would you do?

Well, Mr. Bartolucci, what have you done for MS sufferers lately? Mme. Gélinas? What about you, Mr. Thibeault? Mr. Gravelle?

City councillors, what are you doing to stop medical tourism? Your MS constituents leave this city to buy services abroad. This is money they are not spending in Greater Sudbury or anywhere else in Ontario.

Mr. Bartolucci, we have medical professionals who are ready, willing and able who want to move forward. It is atrocious, morally and humanly wrong, to single out and discriminate against people with MS.

The government elected Oct. 6 will have the power to right this wrong. The federal government also has an obligation to right this wrong. Make your vote count.

Rachel Proulx is a Greater Sudbury resident who has multiple sclerosis.

- Posted by Vivian Scinto