Time To Stand Up And Fight

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

Time To Stand Up And Fight

Postby Blight » Sat Sep 11, 2010 10:15 pm

Hello,

My name is Brian Light I live in Toronto and I have had PPMS for 13 years. Last year when the story on vein constrictions broke on Canadian TV like many I saw a glimmer of hope. I jumped fast and quickly realizing my neurologist would not help I checked on line for vascular surgeons in Buffalo.

I made an appointment saying I had reason to believe I had a vascular problem and went to see a surgeon. He had barely heard of this vein connection to nerve problems but having reviewed the material I brought he pronounced that there was nothing outside of his training. He agreed to look. I had a vein blockage in my jugular and I paid to have it cleared. My MS progression stopped . Any PPMS patient can tell you what a miracle that is. My story since has been more complex but that is the gist. I told scores of other MS patientsand many went to see him. Eventually my surgeon was barred from treating MS patients by his insurance company.

I have also been an advocate trying to get this procedure allowed in Canada. I thought approval would come in months and have been shocked to watch the resistance. MS patients are being discriminated against and this simply cannot stand. 40 of us agreed to form a corporation with 3 directors and all with MS. We hired a lawyer and we are preparing cases to strike down regulations that bar Canadian MS patients from seeking vein treatment. I am hoping that should we succeed here that American insurance companies will be forced to cover vein treatment for US patients.

Every penny goes to the legal fight. Please come and listen to our lawyer Edward Conway on September 16th/2010.

We need you to join us. We are AFA ...

ANGIOPLASTY FOR ALL

September 10th 2010

UPDATE ON LITIGATION PROGRESS

We know many people have been interested in the progress of Angioplasty For All. As you know, from our formation on July 2, 2010, we have been actively preparing for litigation against the Ontario government to ensure that this procedure is made available to all MS sufferers, in our own country. We require your financial assistance to make the litigation work. You have all seen and heard the approach taken by the various governments in Canada. It will be years before any progress is made bureaucratically, if at all.

To bring you up to date on our action, we will have the lawyer who is carrying the litigation, Edward Conway, available for a web-conference on Thursday September 16th 2010 at 4p.m. Ontario
time. I invite everyone, MS sufferers, their friends, the media, whomever, to join us for this informative session. Please email questions in advance to dianaprice@rogers.com for compilation and forwarding to Mr. Conway, or type your questions during the conference. You may use either your own name, or an alias if you wish to remain anonymous – i.e. (
Jane doe)

The web-link is angioplastyforall.com see web conference at the bottom of the menu on the left.

DATED this 10th day of September 2010
______________________

Diana Price
Director
7593066 Canada Inc.
Angioplasty for All

Brian Light
Director
7593066 Canada Inc.
Angioplasty for All

Tim Donovan
Director
7593066 Canada Inc.
Angioplasty for All
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Postby Daisy3 » Sun Sep 12, 2010 12:55 am

Hello Brian,

I am happy to hear that you feel better and that you think progression has stopped.

Will you fill in the sticky about the procedure you have done and how things changed for you?

Also, how long have you had the procedure done for? A few of the guys who have had had their procedure have hit their one year mark and found some olf problems creeping back...I am sure we are all interested in your experience.

BTW, welcome to TIMS:-)
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ccsvi

Postby blossom » Sun Sep 12, 2010 1:45 pm

glad to see your post. i too have ppms 20 yrs. had the procedure but not as good an outcome. but it has only been a bout 6 wks. ago. wish you much success.
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Re: Time To Stand Up And Fight

Postby CureIous » Sun Sep 12, 2010 1:47 pm

Blight wrote:Hello,
Eventually my surgeon was barred from treating MS patients by his insurance company.


A slightly different angle than what I was alluding to last night in my post about the possibility (despite the accepted treatment of venous occlusions as a known pathology with it's own code) of insurance companies in the future "tightening the belt" so to speak, until as such time that CCSVI gets it's OWN code, or is accepted to be treated industry-wide under the codes already in existence for IJV's.

One person answered that they were given what amounts to an ultimatum by their insurer, drugs, or procedure, but not both.

Now if I gather what you are saying, it was the Dr's own insurance (i.e. malpractice insurance, which is a huge factor in any office) put the kibbosh on him doing any more procedures?

That's yet another angle I had not considered.

Insurance companies are corporations. They aren't there for your health, my health, or any other health besides the bottom line. Think we all get that.

Insurance companies always work off what is best for the bottom line, and I offer for any given quarter.

To have an onslaught of 50-100k operations for (estimated) 2-500,000 patients (assuming a certain % want to get treated, can find treatment, have insurance, and identifiable and treatable conditions), would put a serious cramp on the bottom line, and I understand the logic is, "well DMD's cost x dollars over lifetime". Yes, they do.

Spread out over a lifetime. Palatable. Plus insurance rarely if ever pays the going rate. Bigger the company, better their negotiating power to drive costs down via volume. (This is how Costco strongarms it's suppliers to get the best price).

So let's just go 50k, testing to treatment to follow up, for say half the MS'ers in America only. 250,000 x 50,000= 12.5 BILLION dollars of outlay in a very short period of time. And that's just a thumbnail with round numbers.

Let's say every person in the US with MS, and the count of 500,000 I think to be very outdated and low, but lets just bump the example above up to 75% of the 500,000 = 375,000x50k a pop= 18 billion, 750 million dollars.

That is a substantial, humongous outlay of money in a short period of time, with the presumption that say only 20-40% of those treated will discontinue their meds.

Now this may appear to be mere moaning and groaning and negativity, but for the rest of us in the real world, life is lived by the numbers game. Insurance doesn't lower my rates on my auto because they like me, think I'm cool, or in need, or anything else. I played the numbers game well, didn't have any accidents, or tickets, for x years, and the actuarials are pretty heartless and cruel if one has the opposite.


So, now my question is, besides the insurance company angle, which many will say, including me, "well my insurance covered it, no problem", at what point in the future will they do the simple math I did above and balance out their inclusion/exclusion criteria to effect the best condition for their corporation, OR, attempt to spread out those big numbers over the longest period possible, so the CEO doesn't get canned when the quarterlies (which most corps live and die for) show a substantial drop?

And at what point will insurers for malpractice step in and say, "no vein treatments for any MS patients or you lose coverage?".

Things to keep in mind in the times ahead, just because all seems cut and dried with the 50%+ stenosis treatment paradigm under established codes, doesn't predict the future, it's just a good guess.

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby 1eye » Sun Sep 12, 2010 6:20 pm

I don't know. They might do an entirely different actuarial analysis and look at it as an investment which will pay off a couple of quarters down the road when people with CCSVI can tell they don't need these drugs anymore and stop using them. In fact it might be worth their while to interview/poll the people who are happy with the procedures they have had and find out if they are likely to stop using interferons or other expensive drugs. Some might even stop taking the cheap ones.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby CureIous » Sun Sep 12, 2010 8:12 pm

1eye wrote:I don't know. They might do an entirely different actuarial analysis and look at it as an investment which will pay off a couple of quarters down the road when people with CCSVI can tell they don't need these drugs anymore and stop using them. In fact it might be worth their while to interview/poll the people who are happy with the procedures they have had and find out if they are likely to stop using interferons or other expensive drugs. Some might even stop taking the cheap ones.


I hope so, but if the bean counters I've ever known get their hands on it, there won't be any interviews when the calculators start whirring... This is working off a presumption of where CCSVI research may end up in the future, a seriously big "if". Then furthering that presumption to assume that people would be inclined to discontinue their DMD's, sans any recommendations from the PTB, which we can safely assume is not going to come any time soon.

So what I see happening, is a continuance of the DMD machine, it's not going away any time soon, thereby it's costs will continue unabated, but now we've tacked on an expensive surgery atop that cost. I doubt the insurance companies are going to sit idly by while all that occurs and just keep plunking down big bucks for MS patients who just *happen* to collectively, at the same time, require expensive surgery on the same collection of veins....

I mean I hope it don't go down like that, but that's where I see it is heading very quickly....

Really, I mean I REALLY hope none of that happens. I'd be happy to be wrong about it, but we are seeing little snippets of it here and there, keep a watchful ear... :)

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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