Hon. Jane Cordy:

Honourable senators, nearly 75,000 people in Canada live with multiple sclerosis. Another 1,000 Canadians are diagnosed with the disease each year and, honourable senators, nearly 400 Canadians are dying from this disease every year.

Multiple sclerosis is a devastating disease that attacks the brain. It is the most common neurological disease affecting young adults, and it is two to three times more prevalent in females than in males. The symptoms of MS can be anywhere from mild to debilitating. MS sufferers may experience vision problems, loss of balance, loss of coordination, extreme fatigue, speech or memory failure, and muscle stiffness and paralysis.

The causes of multiple sclerosis are still unknown and there is no cure at this time. It is found that in MS patients, there are high levels of iron deposits in the brain, and evidence shows that a possible link exists between these high levels and the deterioration of the patient.

Recent studies of MS patients by leading researcher Dr. Paolo Zamboni in Italy has shown that a high percentage of MS patients have a condition known as chronic cerebrospinal venous insufficiency, CCSVI. CCSVI is a vascular abnormality that restricts the flow of blood to and from the brain and is potentially the cause of the high levels of iron found in the brain of MS patients.

To treat CCSVI, Dr. Zamboni pioneered the "liberation" procedure, which is an angioplasty procedure correcting the abnormality in veins to the brain. Many doctors around the world have begun administering the "liberation" procedure to treat CCSVI on MS patients.

What Dr. Zamboni has found in these patients who have undergone the "liberation" procedure is that they have often experienced improvements in their MS symptoms. Some of these improvements are drastic, some less so, but it is becoming increasingly evident that the procedure can alleviate some symptoms.

Dr. Sandy MacDonald from Barrie, Ontario, was trained by Dr. Zamboni in the CCSVI diagnosis technique and has been sharing the technique with others. Dr. MacDonald has found that almost 90 per cent of MS patients he has seen have CCSVI.

Over the last several years, the "liberation" procedure has been offered and administered to MS patients in countries such as Italy, Poland, Scotland, Japan, India, Mexico and the United States. However, Canadian MS patients are prohibited from receiving the treatment here in Canada. In fact, Dr. MacDonald, the only Canadian doctor to diagnose and perform the procedure, has performed six "liberation" procedures in Canada and he is now prohibited from giving the procedure to MS patients.

Honourable senators, angioplasty is a low-risk, universally practiced procedure used for venous obstructions. All Canadians have access to angioplasty procedures for venous obstructions to their organs — all Canadians, that is, except Canadians diagnosed with multiple sclerosis.

I have to ask, why is our health care system discriminating against MS patients? This procedure is performed by radiologists, heart surgeons and vascular surgeons on a daily basis, but the same treatment cannot be given to MS patients to treat CCSVI.

The argument being made in Canada is that there is not enough evidence to suggest a correlation between CCSVI and MS. Because of this lack of evidence, MS patients are refused even the imaging tests to diagnose CCSVI.

This decision has dealt a blow to MS patients across Canada. These patients are Canadians who wait each day, hopeful that doctors will treat them, not with drugs but with a procedure that is showing promise in 50 other countries around the world.

Many MS patients in Canada see that their only option for relief from their symptoms of MS is through the "liberation" procedure and to have this procedure, they are forced to travel outside Canada to have the procedure performed by unfamiliar doctors and unfamiliar medical systems.

Last week, I received emails from Nova Scotians who shared with me their stories about MS. Jeremy, whose sister Kara Lee, a young woman in her 30s who has MS, emailed me. I will read you part of Jeremy's email:

As a brief background our family accepted quite early that Canada was going to be quite slow in offering this treatment for Kara Lee. She did not want to wait 3-5 years. For several months we cautiously monitored the events surrounding CCSVI. We had evaluated the travel options to several countries however in the end we found that Los Cabos, Mexico was the right decision for us mainly because a friend of the family had undergone the treatment in Los Cabos as part of a 10 person clinic study, so at least we knew it wasn't a scam.

The total cost of the trip was approximately $20,000. $13,500 was for the testing and surgery.

Accepting the treatment was not available was one thing but by far the most frustrating part of the entire process was the inability to undergo testing in Canada. A significant risk when evaluating whether Kara Lee should travel to Mexico was whether she had the CCSVI condition. If she did not have the condition there would have been no procedure. Ultimately undergoing the Doppler was the critical point and there was a huge sigh of relief when it was found Kara Lee did indeed have a treatable condition.

Another factor to the lack of availability of testing is obtaining follow-up tests. Now that she is home, testing in Nova Scotia is not possible, although we understand private clinics in B.C. and Ontario are now offering the testing at cost.

In Mexico the entire testing and procedure were done in a single (very long) day, blood work, Doppler and the "liberation" procedure. The immediate changes were incredible; within 20 minutes after the procedure her legs no longer had a bluish colour, she had feeling in her leg and her speech and sharpness of mind had improved incredibly. We saw similar experiences with nearly all other patients. Based on my observations individuals who were recently diagnosed seem to have the most drastic recovery. One man from Vancouver came with a cane and had difficulty working a full day. He felt so good he golfed an 18 hole round in Los Cabos in August, I could barely stand to be outside. His brother, also underwent the treatment, he arrived in a wheelchair and amazingly his final night walked from the hotel restaurant to his room unassisted.

Kara Lee has incredible doctors here in Nova Scotia who attempt to support her in many aspects, all the while cautioning that they can in no way condone undergoing this treatment abroad. One doctor attempted to requisition an MRI for her, but it was later rejected when it was noted she had MS. Kara Lee informed her two main MS treating physicians that she was proceeding with the treatment in Mexico, and both provided detailed medical records and summaries of her file to the surgeon in Mexico. One doctor asked if she could baseline her before and retest after the treatment, and noted that the results were unbelievable. However, it was noted this was more for personal interest than for research.

We met approximately 15 Canadians undergoing the treatment the week we were in Mexico, spending close to $20,000 each, and we were only there for six days. The hospital was booked solid for months. Most individuals shared stories of fundraising, pinching, scraping or getting loans to make their individual trips possible.

The key messages I pass along to people when asked: Testing needs to be available to individuals in Canada. There is no harm to receiving a Doppler or MRI. Swift action should be taken to register and track progress of patients who have travelled abroad for the procedure. I'm glad to see tax credits for individuals receiving treatment outside of Canada however it seems like we are actively promoting the practice of getting this treatment out of country. With so many individuals with multiple sclerosis off work, investing to have the procedure in Canada would likely pay for itself if only a small portion of these people could return to work. Additionally, appreciating that I am biased, I think this one treatment is very unique, and Canada ultimately needs to get on board. The fact that research studies are looking at proving the link between MS and CCSVI seems ridiculous and appears to some that they are simply trying to delay getting to actual clinical trials. I don't need to give any details on the devastating effects of MS but the associated effects on family are also devastating.

That note was from Jeremy.

Edna Lee, from Glace Bay, emailed me as well. Some of you may remember her, as she spoke before the Senate Energy Committee during the DEVCO mine closures. I will read excerpts from her email:

My name is Edna Lee. I have been suffering from multiple sclerosis for 27 years, a disease with no known cure or cause. As I look back at my history of living with this disease, I have memories of many difficult times, times of struggle to overcome an illness that robbed me of my strength, ability to walk, balance, coordination, extreme fatigue, paralysis, loss of feeling and other symptoms not seen but present.

Multiple sclerosis is a devastating illness, difficult to accept and even more difficult to live with. Canada has the highest incidence of MS in world. MS usually strikes between the ages 15 and 40. As a person living with this illness, I have encouraged a lack of understanding of the illness, even within my own family and community. Many times people say you look so good. I am happy to hear such a wonderful compliment but I wonder what they would think if they knew how I felt inside my body.

I have encountered the obstacles of living with a disability at home and at work. As Canadians, we strive to be the best in the world, to care deeply for our neighbours and to do all we can to ease suffering. We are generous. This has been shown many times over as we have responded to world disasters. We are disability conscious, striving to ensure our buildings are accessible for handicapped, yet we lag behind to ensure our disabled persons suffering from MS have every chance at a cure or improved quality of life by denying them access to Canadian clinical trials, the liberation treatment and follow up care after the procedure is completed.

We have Canadians travelling outside of our great country at enormous cost to themselves to have liberation treatment in the hope this will be the cure that will allow them to live a normal life. Like every other person suffering with multiple sclerosis, I have waited for a cure, waited in hope all these years, hope that something would come along to stop the progression of my illness.

For the first time, we have a discovery that may make the difference in the lives of those who suffer from multiple sclerosis. CCSVI. It appears. . . CCSVI is taboo in some areas of the medical field in Canada and in some provinces such as Nova Scotia. A simple test, a Doppler ultrasound that takes only four minutes, and it is not covered by health care. I will travel to Barrie, Ontario, to be tested on May 30th for CCSVI. I am anxious to have the test done and will pay the fee of $250. Why will I do this? The answer is simple, to find out if I have a chance for a cure or improved quality of life. Sounds crazy, but CCSVI is the first ray of hope for someone like me.

I have read so many good news stories about the improvements felt after "liberation" and if I have CCSVI, I hope I will be able to have the "liberation treatment" in my own country because I cannot afford to pay and spend thousands of dollars to go to foreign lands where I have no idea of the quality of health care I may receive. The lack of follow up care for those who have travelled to have liberation in other countries is a major concern. If I had a heart blockage I would be treated in this country. A blockage of major veins is no different and deserves to be treated.

The Canada Health Act provides every Canadian with access to quality universal health care and therefore Canadians who suffer from multiple sclerosis and CCSVI should have free access to testing for CCSVI and "liberation" treatment without charge. I believe the lack of testing, treatment and follow-up care in Canada for CCSVI is against rights of Canadians under the Canada Health Act.

I want to thank Jeremy, Edna and many others who have written to me about the effect of MS on individuals and their families.

Honourable senators, the federal government must play a leadership role. Often in medicine when a treatment shows promise it is fast tracked. No one can deny that the "liberation" procedure shows promise, yet many MS patients are waiting for a health care system to act while 50 other countries are doing clinical trials. Canadians deserve better.

The lack of follow-up care is a missed opportunity for our health care system to better study and understand CCSVI and the possible relationship with MS. We in Canada are not collecting data. The Canadian MS Society and those with experience in the "liberation" procedure want proper follow-up care for patients who have chosen to undergo the "liberation" procedure outside Canada and they want a registry of Canadians who have undergone venous angioplasty to better track and collate data on the MS patient's progress.

However, clinical trials in Canada are really needed to better study and understand the possible relationship between CCSVI and MS. There is no better way for Canadian scientists and doctors to study the issue than conducting their own clinical trials instead of relying on second-hand data.

Canadian patients are more comfortable and better cared for by familiar doctors. The results of the cases are better understood if conducted here in Canada. An end to this discrimination against MS patients must be our goal. It is a sad truth that the suicide rate for MS patients is seven times higher than the national average, a shocking statistic and indicative of the hopelessness many MS sufferers feel toward finding relief from their symptoms.

The "liberation" treatment is showing too much promise around the world to be ignored by our government. We owe it to Canadians diagnosed with MS, and to their families, to provide them with the best possible care. I implore the Minister of Health to provide leadership on this issue and bring together her provincial and territorial counterparts for the purpose of developing a national policy on the treatment and follow-up care for Canadians with MS.

Honourable senators, this is not a partisan issue. I am sure that most senators here today know of courageous Canadians who are living with MS. We should not have a two-tiered health care system where Canadians with MS must beg for angioplasty treatment, which is already an established part of medical practice in Canada and yet is not available to them because they happen to be diagnosed with MS.

As Kirsty Duncan, the MP for Etobicoke-North, who has done incredible work on this file, stated: "There is only one thing worse than having MS, that is having MS and knowing there is diagnosis to treatment out there, but you cannot get it."

Honourable senators, let us work together to do the right thing.

Some Hon. Senators: Hear, hear.

Please click here to read the full text of this debate

http://www.liberalsenateforum.ca/In-The-Senate/Statement/13431_Multiple-Sclerosis-and-Chronic-Cerebrospinal-Venous-Insufficiency--Inquiry