Tom R. Peterson
Following is a copy of correspondence I have had with Dr. Laupacis. It consists of my original letter to Dr. Laupacis, his reply, and my rejoinder.
I believe the letters speak for themselves. (Dr. Laupacis may want to cross my name off his Christmas card list.)
As long as doctors like Andreas keep us engaged in conversation, all we do is spin our wheels. You might as well save your breath. It is people exactly like he is who constitutes our problem. He will literally “talk you to death” as he masquerades as an honest and “reasonable” broker! Don’t be fooled. He is every bit a part of the establishment as are the rest of the Health Canada related bureaucrats.
We will never find solace in the small medical minds who are dictating the fate of Canadian MS patients. Very few real doctors are behind CCSVI Treatment prohibition. The rest do not want to speak up. All they want to do is look after their patients and ignore medical politics. Can you honestly blame them? What would you do?
Comments would be appreciated.
Original letter, Peterson to Laupacis.
Tom Peterson on July 10, 2012 at 2:35 am said:
Dr. Laupacis,
To begin with, a gentle reminder. While we chat, people with MS continue to suffer and die. This is no idle banter.
(This following is copied here from “Healthy Debate”, Dr. Laupacis, so you may have read it before.)
The “Expert Panel” is going to be asked to make a judgment that effects the very next breath a person with MS might take.
If CCSVI Treatment continues to be prohibited, the rich will continue to be rich and no doubt get richer, and some people with MS will continue to suffer and die because they cannot afford to go out of the country.
If CCSVI Treatment is approved, the rich will stay rich, (maybe a little less rich), but some people with MS may live when they might have died, or may suffer less than they ordinarily would have. The need for evidence based medicine will hardly be dealt a mortal blow.
When you consider the big picture, what harm can be done by allowing CCSVI Treatment anyway?
Not very much. If the MS medical establishment had simply allowed CCSVI Treatment in the first place (what were they afraid of?), everyone would know a lot more by now about the CCSVI/MS relationship.
Wouldn’t they?
Prohibition never works. All CCSVI Treatment prohibition did was to force Canadians to seek help somewhere else. If there IS a market, there WILL BE a market – it is up to legislators whether this market will be black or not.
My MS specialist was Dr. Ken Warren. (I live in Edmonton, by the way). He has now retired from active practice. As you no doubt are aware, when it comes to MS research, he is one of the best of the best.
When news of CCSVI first broke, Dr. Warren tried (unsuccessfully) to get a trial going as soon as he could. As he said “Tom, if there is anything to this, even though I think it’s kind of batty, I want to find out (for sure) just as soon as possible.”
It makes me kind of proud to have been one of his patients. He was concerned about me – he was concerned about all his patients. He wanted to do the very best he possibly could.
He was not concerned about undermining the principles of evidence based medicine. He was not concerned about his prestige. He was concerned about me. And I very very much appreciate that.
My GP told me “Tom, don’t worry about follow up treatment. If you need help, I will give it. And you don’t have to prove you are dying first.”.
To me at least, these doctors live their Oath. And they do it proudly. (And by the way, Dr. Laupacis, I actually do know what your Oath says. So much for “First, do no harm”.)
On average, more than one Canadian dies from MS each and every day.
Can you look yourself in the mirror before you go to bed tonight and say “Today I have done everything in my power to save life. Today I have given life every chance I could, even if it seemed unlikely”?
Can you look me in the eye and say “Tom, I believe that supporting evidence based medicine by prohibiting CCSVI Treatment is in your best interest?”
Can you?
Dr. Laupacis reply to Peterson
Thanks Tom.
I don’t think that compassion for the plight of patients (with MS or the many other miserable diseases pateints suffer from) is incompatible with saying that we need good evidence before paying for treatments through our publicly funded health care system. In my view, as much as possibe, the public system should only pay for treatments that we know do more good than harm, because our resources for health care are limited.
At the present time we don’t know whether that is true for the treatment of CCSVI. I note that Dr. Warren was calling for randomized trials of CCSVI treatment, not for CCSVI treatment to be offered immediately. Dr Warren was actually supporting evidence-based medicine.
If it turns out that CCSVI really does more good than harm, then we will likely look back and say that we took too long to get the randomized trials underway.
On the other hand, if CCSVI turns out not to be beneficial, we will look back and say that lots of patients were given false hope, paid lots of money for an ineffective treatment, and some unnecessarily experienced serious side effects.
Finally, as i have said a few times on this site, I really think it is wrong to imply that treatment for CCSVI has been shown to save the lives of people with MS – to imply this is the case is totally misleading.
Andreas
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Peterson Rejoinder
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Dr. Laupacis:
We KNOW CCSVI Treatment does more good than harm. To ignore the consistent first person evidence of hundreds of people over time is to ignore valid empirical evidence of the first order. To continue to ignore this evidence is unconscionable. I think you know better.
As I have pointed out, CCSVI Treatment is cheap cheap cheap compared to the cost of pharmaceutical interventions that kill, injure, that do not work, that are not worth what is being paid for them. Ask the Brits.
Thirty thousand dollars a year for drugs vs a one-off, maybe two-off etc. surgery that would cost $1,500 - $2,000. Do the math. If you are so worried about all the money we are spending, why are you not worried about the waste of $$$ on MS drugs that don’t work?
If CCSVI Treatment Is just a little bit successful it will save governments hundreds of millions of dollars. But some doctors (mostly neurologists), some MS Society executives, and some pharmaceutical companies will not be happy. Gee whiz!
Drugs that continue to injure and kill AS WE SPEAK have been approved by “evidence based medicine”. What evidence? Evidence provided by PROVEN organized crime – i.e. pharmaceutical corporations.
You ignore the words of hundreds of people yet cling to the notion that DBRCTs have been effective in helping people with MS. Which drugs would you like me to take? The ones that might kill me, or just the ones that don’t do anything but cost tens of thousands of dollars every year? Tell me. I am asking?
You say our health care system should only pay for treatments that we KNOW do more good than harm. So, just what evidence did all those people who approved of Tysabri consider? How much is a life worth? What is the tradeoff? Tell me. I am asking?
Double blinded randomized controlled trials. Good in theory. Too bad that is not the way life really is. At least for people with MS. Dr. Laupacis, you are a clever fellow. You know this.
LOOK AT THE REAL EVIDENCE! What you are advocating is that we should trust companies like Pftzer and GSK who have every reason to lie and no reason to tell the truth, while ignoring the testimony of hundreds of witnesses who have no reason to lie and every reason to tell the truth?
Do you have a double standard, or what? You would be laughed out of any courtroom in Canada. It is a pity that single payer health care leads to medical dictatorship as it has when it comes to MS and CCSVI. Physicians have terrific IQs, but their EQs are the same as anybody else. Power corrupts. Etc. The best medicine money can buy.
If it turns out CCSVI does more good than harm, we will look back and say “How much suffering could we have prevented? How many lives may have been saved?” CCSVI Treatment does not give false hope.
Ah, looking back – you obviously have no sense of urgency about you – you are not suffering, you are not dying – I guess you can afford to be philosophical.
If you read my letter again, you will find I did not say Dr. Warren called for CCSVI Treatment to be made available. He called for trials. Do you have problems with my use of the language? I quote “When news of CCSVI first broke, Dr. Warren tried (unsuccessfully) to get a trial going as soon as he could”. What is it you don’t understand here?
To imply CCSVI Treatment may save life is NOT misleading.
The case regarding Dr. McDonald and Barb Farrell is well documented. And publicized. Apparently you are not as aware as I thought. Look it up.
Barb was left to die by people just like you, who bathe in the crystal clear waters of reason, as defined by the reasoners, as approved by the approvers. Does that bother you at all?
“Paid lots of money”, for ineffective treatment? CCSVI Treatment in the U.S. can be had for one fifth of what it costs every year for MS drugs. Who are you trying to kid? Just how stupid do you think we are?
Side effects? You have the nerve to talk about the side effects of an CCSVI Treatment intervention? When you KNOW what side effects MS drugs can have? When you KNOW how many people have died from Gilenya – so far?
Incidently Tysabri has 10 – 20 times (depending on what you want to count) as many injury incidents as CCSVI Treatment. I have lots of other stats if you are interested.
Dr. Laupaics, talk to people IN CONTEXT when making your points. Don’t give us the gears. We know better.
Anne Kingston was right – the Canadian Health System is guilty of ignorance – guilty of ignoring what is happening in the real world, guilty of looking through rose coloured scientific glasses that only see what the MS establishment wants them to see. How coincidental that millionaires and science just happen to agree? Gee whiz!
It is true that CCSVI Treatment has not proven to be as effective as MS patients had hoped. It is true that much more research needs to be done. It is also true that CCSVI Treatment helps some people some of the time. Just like Dr. Liu hypothesized. What if you were among the “some” that might get help?
You have intelligence, but you seem to lack soul. Pity.
I will be publishing my letters and your letters. Fair warning.
Tom