February 20, 2011

The Canadian Dilemma re MS

My experience - most things are not that difficult - until you let a politician mix in. 

My Opinion - Unfortunately, MSers in Canada have the politicians even though we did not invite them. Doctors  we trusted, forced them in in order to keep the money train running for themselves and for the drug companies who make money from illness, not from wellness. Control the income at all costs, even if the cost amounts to a few lives.

People have taken what I have written to the Ministers and taken it as a completely anti drug stand. Not So! I take drugs when they are needed and when they do what I expect them to. Like antibiotics - take them often for bladder infections brought on by the need to self catheterize constantly. Some people have taken it as a rant about the specific drug, tysabri. Not really. I have no personal experience with the drug. I do take exception to being denied the right to have a procedure I believe will help me as it has helped other MSers on the grounds of safety while a drug with a rap sheet for killing or making more than 100 people ill with brain infections has no such restriction put on it.Perhaps people who feel I am somehow being tough on Tysabri will understand better after they read this.

The question of the value of tysabri to some people is not the point. And the question of how many people have died is also not the point. The point is that here in this country - Canada - we are denied a perfectly viable treatment and the grounds used by our government for denying it is one of safety. Supposedly, it cannot be performed as it's safety has not been proven. The one case they love to throw at us MSers is that of Mahir Mosic. Mahir did not die from the procedure. In fact, he was doing pretty well a couple of months after the procedure was done in Costa Rica. Then a blood clot formed around his stent and he went to his Canadian doctors and was refused help. He then had to get on a plane in that condition and fly back to Costa Rica for help. Perhaps there are some conditions where waiting and flying for hours help the condition but I cannot think of any. In my opinion and that of a good many others, Mahir died of neglect at the hands of the Canadian medical practitioners he went to for help. And they were pushed to behave in that despicable manner by the government and the College of Physicians and Surgeons who had threatened to lift their licenses. Why they did this is anyone’s guess and most of the people I have spoken to guess that the Big Pharma - the ones who sell those expensive MS drugs that work for the few rather than the many - paid them off and threatened them. In the four months since Mahir died, no one from either the government nor the pharmaceutical companies have come forward to prove us wrong in our thinking. They have not opened their books to public scrutiny. Indeed the digging done has been from this side of the fight and the evidence found shows that, with some doctors at least, there is a definite conflict of interest. Our Canadian government uses the services of these conflicted doctors as a base to their ruling that Vascular Angioplasty is not safe and therefore cannot be allowed in Canada.

Meanwhile, Canadians with the money to do so have been flocking to the US locations, to the European locations – to every location imaginable where vascular angioplasty is offered. A good many have returned with few MS symptoms left while another group come back to notice changes happening though more slowly. And a third group notice no improvements at all. All, as far as I have heard, knew there were risks involved and that one of those risks might be that there would be no improvement. In medicine this is not as unheard of as some people like to think. I had breast cancer in 1990. I was operated on, accepted radiation treatment but refused chemotherapy and decades later – no further cancer. A gal in the same room had the same operation and the same treatment as well as the chemo. She was not as lucky as I was.

About the Tysabri. It has been approved. Compared to our one death – lets be wild and call it 5 deaths just in case I missed the news on 4 others- there have been 20.  At least there have been 20 that the manufacturer is willing to own up to. Where are all these safety fears?? Where was Leona when Tysabi was deemed safe to use. And 95 cases of a rare brain infection??? That one is 95 to 0. Assuming that Tsabri is safe and useful to some, where is that list of criteria so that a doctor can safely prescribe it to those who it is good for and avoid those who it is not good for? Where is the test like the allergy test for penicillin?

If a patient walks into a doctors office and the doctor says, “Whoa! You have MS. Here’s the choices you have. You can take this wonderful drug Tysabri that we tested you for and that is safe for you  or I can send you to a vascular surgeon and his tech staff  and arrange  for vascular angioplasty or you can do nothing but take the vitamin regimen you are already on. It’s your life and your body so it’s up to you. Do a little research on all thee choices and get back to me.” That’s one thing. As it stands right now that same doctor tells you what he is going to give you. Period. If you question him like I did, you get an ego trip to end all ego trips. You will get spoken to like you were a mental retard with an IQ of minus two.

The present situation in Canada is not decent. It is not humane. It is not ethical. And if the order were coming from anywhere but The disHonourable Minister of Health and her provincial counterparts, it would be illegal and unconstitutional. In my opinion it IS illegal and unconstitutional.
Some say, “It also injures or kills a small number of patients.”  Gotta warn you. I get right hostile when people discount death like it was nothing but a number on a sheet of paper.  Would you be so calm about it if one of those few were your Mother or your Wife or Sister or any relative you care about? This treatment was looked into decades ago and buried by the drug researchers. At this point in time, had they not buried it, MS would be like polio – rarely heard about anymore or part of a reminiscence of decades past.

Do you live in the USA?. Not far from where I live as the crow flies but eons away on the subject of MS treatment. This letter is not to American Health Officials. It is to Canadian Health Officials and its point is to show that their argument is not logical, not humane, not legal and not constitutional – up here. At the moment, I daresay there are a large number of Canadians who are more than happy that this is not the case in the USA. They are the ones already treated south of the border or about to be treated there.

Now They Know!

February 19, 2011

Now They Know!

While wandering around on Facebook this morning, I found an article on Tysabri.

http://online.wsj.com/article/BT-CO-20110217-718604.html

To say it made me mad is a huge example of understatement. It made me furious! So furious that I sent the following letter to the two women in my life who have the power to do something but who do nothing. Sent a cc to my on MP also.  Here it is:

    NEW YORK (Dow Jones)--Biogen Idec Inc. (BIIB) disclosed 10 more cases of a rare brain infection among multiple sclerosis patients taking Tysabri, a medication it sells with Elan Corp. (ELN, ELN.DB), bringing the total number of affected patients to 95 as of Feb. 2.

    The Weston, Mass., biotech company reported that four more of those patients have died, bringing the total to 20.

Are you two ladies still listening to your "Experts"?  If you are, I hope the family of the next Canadian that dies because they were treated with Tysabri on the advise of your experts sues you and your party and your useless experts and the pharmaceutical company. In fact I hope the families of anyone who has ever died from taking this "safe" drug sues you. Ms. Matthews, I know you are only responsible for things that happen in Ontario but I include you because the odds of an MSer in Ontario dying from this legalized drug pushing is quite high due to the number of people you represent here (and because you and Leona appear to have the same standard letter writer). There is a precedent for suing the government. Mr Mulroney did quite well doing it didn't he? And his case was a tad questionable. Ours is not so questionable I don't think.

Knowingly prescribing a lethal drug - Hmmm I would think there is a case for the homicide division of the RCMP here, don't you think. It should not be that hard for them to find a money connection for a motivating factor.

Are your experts telling you that tysabri is safer than Vascular angioplasty? Come on, girls. You both cannot be this brainwashed or is this just stupidity? We voters do expect you elected representatives to use your own heads.

One other thing - Have you noticed there is a total lack of respect here? That is because it is impossible to have any respect for people, especially fellow females (We female voters do expect more heart and less greed or stupidity as the case may be, from females), who have upheld my death sentence by MS. You insult my intelligence. You treat me and my fellow MSers with a total lack of respect. Be happy Leona that I call you Leona. The only other option for me is to call you The Dishonourable Minister.

I think it is time for me to go have a little daydream. My favourite day dream? Why it is where you two ladies find yourself suffering from MS and find yourselves broke from all the law suits and stuck having to live with your own rulings.

I have sent you the news item. Do not say "I didn't know."

Sincerely

Karen Copeland
MSdragonslayer