Good morning.
I wish to thank the committee for allowing me to testify today. I'll try to get through my points as quickly as possible, as I only have five minutes. This feels like the most important five minutes of my life.
I'm here to testify for my sister, Michelle. She is a young woman in her thirties with three small children, ages six, four, and the baby is not yet two. Two and a half months after the birth of her third child, she developed symptoms. She was diagnosed on December 8, 2008. Within seven months, she was confined to a wheelchair. Her disease is both progressive and aggressive.
Studies are currently under way at St. Joesph's and McMaster for CCSVI. As important as these studies are, many with MS, like my sister, don't have time to wait for the results. I'm here to ask the committee to take whatever steps, whatever action necessary, to ensure that those who do not have time to wait for two years for the results of a study get immediate treatment for CCSVI on compassionate grounds.
Like many people with MS, Michelle paid out of pocket to go to Buffalo to have the tests done to determine whether she has CCSVI. The tests showed she has diagnosis in both her jugular veins and needs to have her veins unblocked immediately. Some people with MS have been fortunate enough to pay for and travel to other countries, such as Poland, Kuwait, Italy, to get their veins unblocked and are returning to Canada feeling that they have been cured, liberated.
Even if one had the means to go outside of Canada, there is a waiting list of over one year to get the procedure done. Why isn't it being done right now in Canada?
Canada has an opportunity to be leaders in this breakthrough. Many of you have an opportunity to be heroes. I know for sure that there's at least one right here, right now. I'm asking the committee--no, I'm begging the committee--to take immediate action, whatever necessary, to unblock the veins of those suffering with CCSVI, even if they also happen to have MS, and particularly the ones whose conditions are galloping, like Michelle's.
Why should people with MS be discriminated against? Why should they not have the choice in getting their veins unblocked? Canadians are able to get their veins unblocked for any other organ in the body. Why not their brain? If nothing is done and patients are forced to wait for the results of the study, people like Michelle will die waiting. Knowing this and doing nothing is like watching someone drown while you test flotation devices.
It's manslaughter. It's unethical. It's immoral.
I'm sure this committee has heard the financial comparisons with respect to the cost of CCSVI treatment, which is approximately $1,200 to $1,500, versus $25,000 to $40,000 per year for standard MS drug treatments. From a financial point, then, clearing veins makes sense.
What about the right to choose treatment? Canadians are fortunate, in that they have choices: abortion, circumcision, cosmetic surgery. These can be controversial and rooted in religion, women's rights, or aesthetics. Shouldn't Canadians have the right to unblock their veins?
To improve the quality of their life, take MS out of the equation and treat CCSVI like any other venous insufficiency would be treated in the body. Each day that goes by, Michelle's condition worsens. Neurologists prescribe a host of drugs and drug treatments that carry great risks, such as chemotherapy, and also a drug called Tysabri, which has been known to cause fatal brain disease. Yet some neurologists have been vocal in expressing their concerns about a very low-risk procedure to unblock veins. Clearly, drugs such as these pose a much greater risk than in an angioplasty-type procedure.
One neurologist in particular has expressed fear of losing the research dollars to CCSVI studies and has even suggested that CCSVI and its relationship to MS may be a hoax. It may be like the chicken and the egg: it doesn't really matter at the moment if CCSVI causes MS or if MS causes CCSVI.
The studies under way may provide answers to these questions. What matters and what we do know now is that people have blocked veins and need to get them unblocked. Not doing so is wrong on so many levels, it's immoral.
Michelle is often confined to a bed, since there are times when she can't hold up her head or keep her balance in a wheelchair. She is too weak sometimes to speak and suffers unbearable headaches. Her children look shell-shocked as they watch their mother deteriorate before their eyes. And her husband looks thin, beaten down, frightened, and exhausted.
The only thing keeping her alive is a shred of hope that she may get treatment soon to unblock her veins and that she may one day be able to hold her baby again, change her diaper instead of watching a caregiver do it, and push her children on a swing in the park.
She deserves a chance. Please take whatever steps are necessary to give her this chance.
Thank you.