Sherry Drew's letter from Mr. Layton really needs a response from everyone. Here is mine.
Hon. Jack Layton
House of Commons
Ottawa, Ontario
K1A 0A6
March 15, 2011
Dear Mr. Layton,
Tonight I read a letter from you to one of our members at the CCSVI blog I belong to on Facebook. While I was pleased to see your response was not totally negative I am disappointed that it is so lacking in starch as well. If this venoplasty we MSers are so anxious to have available to us were a treatment for prostate cancer instead, would you be so limp wrist in the stand you are taking? If I am not mistaken, there were no trials for the treatments available for prostate cancer. Initially, they did the best they could and improved upon it and continue to find ways to improve upon it. It never became a political football. Of course there is the difference that the doctors treating you and those treating me are two different animals altogether.
Starting with your diagnosis. After the correct tests, you know you have cancer. After no definitive tests and a lot of anecdotal information I give them, they guess that I have MS. Have you listened to the MS neuros? Anecdotal evidence (as far as CCSVI and venoplasty is concerned) is not reliable and probably is just a placebo effect. But it is reliable enough for them to diagnose MS with?? The only proof that I have MS is anecdotal - sure the MRI shows lesions but Lesions in themselves are not a sign of any particular condition. It could just as well be lupus or Lyme disease.
Speaking of which, are you aware that Lyme and MS have the same symptoms? Except that Lyme is bacterial and can be treated effectively and in short order with antibiotics. Are you aware that none of us are given proper tests for Lyme? Are you aware that several Canadians have taken proper testing for Lyme on their own nickle only to find out they have endured MS CRAB drugs for years when, in fact, they had Lyme? Even before CCSVI became a news item, we should all have had this eliminated but we were never told it was even a possibility.
But back to the MS. Now that I have been given this diagnosis, if I am rich enough, they guess I should be on a CRAB drug at around $2,000 - 4,000.00 per month. Here is where being poor is a blessing in disguise because if I am not rich enough to foot the bill, I am just ignored or perhaps given epilepsy drugs even though I do not have epilepsy (that's what they did to me). It's a blessing in disguise because it has never been proven that the CRAB drugs do anything good though it is pretty well known that they can and have done damage to some people. Where is our Parliament when we need drug testing that is reliable and properly done? Gee! I have yet to hear anyone on the Hill get up and demand proper testing with proper precautions. Does it ever set you to wondering what the hell these drugs are made with that makes them worth thousands of dollars? Gold dust perhaps? I guarantee you, if you can find a way to get the price of these MS drugs down to less than a couple of hundred dollars per month per person, the entire question of whether CCSVI is safe or not will magically disappear. The money makes it a good scam-able item and the MS neuros are licking their chops. Without the drugs, they would go broke in short order and move on to something more lucrative.
No one has called venoplasty a cure for MS but many have found it relieves a good many of the worst symptoms. It puts some quality back into our lives. It gives us back a bit of our independence, and our self-esteem. This is every bit as much a scandal as the Bev Oda affair or the In and Out Affair. Actually, it should be a bigger scandal because it deals with people's lives, not just their money. So please tell me why, there is not one man and only a couple of women in the House of Commons with even an iota of consideration for their fellow human beings? With any logic? With any balls? Why? Have you all forgotten who pays you and why you are there? When, oh when are you going to start defending the people first and the money second? The answer should be crystal clear. Money does not vote; people do. However did you let a man with a minority government become the dictator he has become? He, via his Health Minister, has dictated that people with MS shall die a slow and horrible death. The next time you are tempted to stand up and speak against Ghadaffi and the horrors he is inflicting on the Lybians, don't! Not unless you are willing to speak out against our own little dictator and the horrors being inflicted on Canadians. You can start with the medical abuse being meted out on Canadian people with MS. That kind of charity used to be a foregone conclusion in Canada. It isn't any more. Make charity begin right here at home again.
Speaking of lives and charity, are you aware that one of the Provincial NDPers, Maureen MacDonald, has refused to help a man dying of MS in Nova Scotia? She says her hands are tied. The only one tying anyone's hands is herself. Medicare is a provincial affair in the end, isn't it? She is in a prime spot to send the Conservatives' trash right back at them but she didn't. Bill Peart will die from neglect given by his governments and I, for one, hope this ends up in a criminal court of law.
What I want to know from you, Mr. Layton, is why?
Very Sincerely
Karen Copeland
229, 2100 Russell Road,
Ottawa, Ontario
K1G 3W7
After reading some of the responses on Facebook, I sent this as well:
Re: CRAB Drugs - I tend to lump all MS drugs into that category - mostly because the word Crab brings up mental images of pubic lice and is disgusting and offensive. In fact, my definition is inappropriate as CRAB refers only to 4 specific drugs. However, I would be grateful if you could apply my definition rather than the medically correct one. I do mean all MS drugs including the new Gylenia which is coming for $4,000.
Thank you
Very Sincerely,
Shame on Canada!
http://its-time-to-slay-the-ms-dragons.blogspot.com/
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