Loss of a chance of a cure

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: Thanks!

Postby Johnson » Tue Dec 22, 2009 4:52 pm

Rose2 wrote:...
Writing and composition are my weakest points, but there are alot of friends who can fix it for me, I know that! Heck, I have friends that do it professionally, so I don't know why I ever hesitated or never thought of it.
I will make it my next labor or love.
Appreciate it all! Sincerely, Rose


I don't know about that, Rose. I got a lot from your, and everyone's stories. I don't think that style is so important when speaking from the heart. By all means have others critique, help you to polish, whatever you feel you need, but it is your story. And it's a darned good one!
My name is not really Johnson. MSed up since 1993
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Postby ozarkcanoer » Tue Dec 22, 2009 4:55 pm

Rose,

I love all your posts. I vote for an unpolished story from your heart. It will be real !!! :D :D :D

ozarkcanoer
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Postby Katie41 » Tue Dec 22, 2009 5:26 pm

I agree! The accounts from those who have had the stents and/or ballooning; their previous condition; their current condition; told in their own heartfelt words, is so powerful! :D
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Postby Jugular » Tue Dec 22, 2009 11:26 pm

In Canada, once liberation therapy gains a bit more traction, one useful legal stratagem may be to sue various provincial governments to fund CCSVI treatments in other countries.

Some of the provincial health care acts provide that If a patient is referred outside of Canada by a physician for treatment not available in Canada, the provincial government will cover the full cost of the treatment, if approved in advance.

This would force the various provincial governments to have to deal with the situation and put pressure on them to make the treatment available in Canada.

Similar approaches could be attempted in other state-funded healthcare systems (including possibly the U.S. if Obama’s Act passes). There is already the precedent of some U.S. private healthcare insurers agreeing to foot the bill based on the treatment (stenting) being necessary to correct a diagnosed medical condition (CCSVI).
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reg613

Postby katie45 » Thu Dec 31, 2009 8:05 am

reg613 do you have a contact address, email? katson45@shaw.ca
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Postby happy_canuck » Thu Dec 31, 2009 8:23 am

Jugular wrote:In Canada, once liberation therapy gains a bit more traction, one useful legal stratagem may be to sue various provincial governments to fund CCSVI treatments in other countries.


I have never heard of anyone suing for treatment in Canada. Is this something you can confirm? IMHO, as a Canadian, we don't generally jump to litigation and I like it that way :-)

Canadian provinces would already pay if you are out of the country and fall need to be sent there b/c treatment is not available in that province (as you state). Why would we have to sue?

Besides, I have faith that our vascular surgeons will step to the plate in great number if and when UBC starts showing results from its study, which involves treating people with identified stenosis. I think this is the first double blinded study of CCSVI in the world -- so Canada's specialists will be in good shape to get the best information to implement treatment.

I am an optimist at all times, but especially now since I started following CCSVI research. However, having had my MS traced back to 29 years ago, I have lived with this a long time. I realize Zamboni's work shows tremendous promise but may not be the full answer for me or in my lifetime. But I'm OK with that too. I think it will unravel another piece to the puzzle and make the future better for the next generation where we may finally begin to talk about MS in the past tense.

~ Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby Vhoenecke » Thu Dec 31, 2009 8:25 am

You are right Brainteaser. The bigger the club, the sooner they listen. We in numbers are a big club, we just need to unite. I can't believe they have shut down testing. They honestly think we will go away!
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Postby Jugular » Fri Jan 01, 2010 9:23 am

happy_canuck wrote:I have never heard of anyone suing for treatment in Canada. Is this something you can confirm? IMHO, as a Canadian, we don't generally jump to litigation and I like it that way :-)

Canadian provinces would already pay if you are out of the country and fall need to be sent there b/c treatment is not available in that province (as you state). Why would we have to sue?

Besides, I have faith that our vascular surgeons will step to the plate in great number if and when UBC starts showing results from its study, which involves treating people with identified stenosis. I think this is the first double blinded study of CCSVI in the world -- so Canada's specialists will be in good shape to get the best information to implement treatment.

I am an optimist at all times, but especially now since I started following CCSVI research. However, having had my MS traced back to 29 years ago, I have lived with this a long time. I realize Zamboni's work shows tremendous promise but may not be the full answer for me or in my lifetime. But I'm OK with that too. I think it will unravel another piece to the puzzle and make the future better for the next generation where we may finally begin to talk about MS in the past tense.

~ Sandra


Hi Sandra! The thread was about litigation so I threw in my 2 cents. What I was thinking about is a stop gap measure after CCSVI has survived some further scrutiny but treatments are not yet available in Canada. If a referral is obtained to have CCSVI treatment performed in Poland, for example, the provincial health department(s) can be asked to fund the procedure (and the trip). If the basterds refuse, one can incur the expense of the treatment and sue or seek declaratory relief. Win or lose, the publicity would help.

I am hopeful, however, that we won't have to wait that long to be able to have this done in Canada. As I believe Mechanically Inclined said in another thread, we should be leaders rather than followers here.
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Postby happy_canuck » Fri Jan 01, 2010 5:50 pm

Jugular wrote:As I believe Mechanically Inclined said in another thread, we should be leaders rather than followers here.


I 100% agree with you on this point. Canada doesn't have the highest number of people with MS, but I think it has one of the highest proportions? In any case, I don't know what our recourse is if our provincial healthcare refuses to fund testing and/or treatment once they can't hide behind the newness of it all anymore. I imagine there will be unbelievable pressure to do something because everyone knows someone with MS, even politicians :-)

Happy 2010,

~ Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby scraps » Fri Jan 01, 2010 9:43 pm

CureIous wrote:Hi Ana, thanks for your comments and welcome! My insurance paid for this procedure, so no class action for me, but it sounds like a good idea if for nothing else, to wake em up that we refuse to hear anything but progress in this area. Not sure if I would sue any particular doctor per se. Last thing we need is doctors dumping MS patients for fear of reprisals. Is there any specific precendence related to this other than common law theories? Only reason I ask, is in sue-happy America, our lawyers are pretty keen on how to squeeze blood out of a turnip, if it's actionable, they'll do it. If there's dollar signs, they'll do it. So it must have been done already.

I'm not suggesting to pursue this avenue at all, just wondering what cases would be used in support.

:) Mark.


CureIous:

Noticed at the bottom of your post that you had the procedure done in Aug. 09. I'm assuming you had Dr. Dake perform same? If so, could you tell me how you contacted them, did they take insurance and what was the cost if you could reveal that?

I've been trying to reach Dr. Dake for the past 5 weeks with no success. His cordinator does not return phone calls.
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Postby SandyK » Fri Jan 01, 2010 10:04 pm

Hi Scraps. Dr. Dake isn't performing the surgery right now. He is setting up for this to be a trial study. Out of pocket that surgery was $80K. Insurance will pay as long as it's treated as a vascular issue and nothing to do with MS.
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Postby mangio » Mon Apr 12, 2010 8:26 am

I heard from a University in Berlin hoping for updates on their data.
Big fan.
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class action

Postby 1eye » Mon Apr 12, 2010 9:37 am

I posted in classactionworld.com after seeing a woman crying, on *You tube* about cancelled treatment, that I would join any class action. Now I would like to say that if chosen by a class action lawyer, I will be the prime complainer in one, or whatever the legal language is. Apparently they have to choose somebody willing to go to court, and they can't do anything without a paper trail. If there are members of the AMA or CMA who have MS, or just those of this situation that are fed up, and want to help, please talk to a class action lawyer. There is a good one called Harvey Strosburg operating in Windsor Ontario Canada who has done cross border work, but has not responded to me, either because he believes I do not have a case, or because he is too busy, or ? My sister used to work for him. I say this to declare myself in case of conflict of interest accusations. She doesn't and hasn't for a long time. She's much better off than I and lives in a different city than I. She does estates. I think if enough people from TIMS who DO have a GOOD paper trail, that leads to big associations, MS society execs, big drug company execs, etc., they should drown the lawyers with email and convince them to help... women with MS and families and dying people with MS need them. You can Google Harvey Strosberg if you need his phone number or email. I don't think anyone can accuse me of having no sense of humour about this. (see the Colin Rose threads) Or of not being a Canadian with one of our celebrated long fuses. But eventually even long fuses burn down, and: BANG! Be advised that even successful class actions will *not* usually take less than 2 years. I'd better talk to my sister and get my will in order.
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Postby Brightspot » Tue Apr 20, 2010 10:43 pm

With respect to "paper trail", persons with multiple sclerosis who do not feel they are being given adequate medical attention might want to keep records of their attempts to access appropriate medical care.
This might nclude:
-dates of appointments with doctors and copies of documents provided to them (including documents regarding CCSVI, or the results of any radiological studies you have had performed at your own expense)
- what symptoms they have described to their doctors,
- what requests they have made for referrals and what the response was

I think this might be particularly important for those who have provided medical evidence in the way of radiology reports and test results to their doctors, and are refused appropriate medical follow up.

Not a lawyer, but just thinkin...
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Postby Johnson » Tue Apr 20, 2010 11:21 pm

Brightspot wrote:With respect to "paper trail", persons with multiple sclerosis who do not feel they are being given adequate medical attention might want to keep records of their attempts to access appropriate medical care...

Not a lawyer, but just thinkin...


It is good thinking, Brightspot.

I had a referral to the Doc. in BC who did BC #s 1 & 2, because of my own pathology. Of course, we know that was shut down. I think that I must have a Charter of Rights and Freedoms case - that I am being denied treatment for a recognized pathology, because I belong to a sub-set of society that has been labeled with a disease of unknown aetiology, and "with no effective treatments". I have been prescribed Valium to deal with my balance problems (?!!!), with the neurologist prescribing admitting, that it would make my considerable fatigue worse. I pay $114/month for social medical coverage, and I am being refused treatment. The social contract has been breached.

I am trying to gather the strength to get to a couple of walk-in clinics, with my MRV and Doppler reports in hand, and ask for treatment. Not for MS, but because my thyroid is compromised - due to compromised venous outflow, and I am slowly dying of the resultant metabolic disorder. 6'2" @149 pounds and dropping... That will be more than ought to be expected of anybody who can't even wash the dishes anymore.
My name is not really Johnson. MSed up since 1993
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