This is really the issue

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

This is really the issue

Postby BooBear » Mon May 17, 2010 3:48 am

http://www.theglobeandmail.com/news/nat ... le1550377/

Amazing that lawyers want to stop procedures for fear of liability, yet have no fear of a lawsuit from a patient developing PML from Tysabri use.

When I chose to participate in an oral cladribine clinical trial, I did have to sign a waiver indicating that I was aware and understood the risks of this trial; in doing so, I also waived any rights to sue if something went wrong.

Why or why can't we do the same thing with this procedure?

Seems pretty simple to me. I will waive my rights to sue if something goes wrong, provided that the proper protocols are followed in giving me a standard angioplasty. Can I have my procedure now??
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Re: This is really the issue

Postby lumpc1 » Mon May 17, 2010 10:05 am

BooBear wrote:http://www.theglobeandmail.com/news/national/legal-fears-thwart-doctors-bid-for-liberation-from-ms-pain/article1550377/

Amazing that lawyers want to stop procedures for fear of liability, yet have no fear of a lawsuit from a patient developing PML from Tysabri use.

When I chose to participate in an oral cladribine clinical trial, I did have to sign a waiver indicating that I was aware and understood the risks of this trial; in doing so, I also waived any rights to sue if something went wrong.

Why or why can't we do the same thing with this procedure?

Seems pretty simple to me. I will waive my rights to sue if something goes wrong, provided that the proper protocols are followed in giving me a standard angioplasty. Can I have my procedure now??


AHMEN!!!!!!!!!!!!!!!
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Postby LR1234 » Mon May 17, 2010 10:12 am

I agree
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Postby blossom » Mon May 17, 2010 10:35 am

i totally agree. have you heard if the doctors that have gotten some people treated and then got shut down were having patients sign anything? i like you would do it.
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Postby BooBear » Mon May 17, 2010 12:25 pm

Blossum, I am not sure if anyone signed anything specific (other than the typical permission-to-treat sort of thing you always sign when having a procedure). Would be good to know! Perhaps one of the liberated among us can help fill us in.

This article blew my mind. First, she is a doctor herself. Secondly, she got so far as to have the IVs inserted when it was all pulled away from her. Third, she was blocked from having the procedure because of lawsuit fears. Unbelievable.

Perhaps a class-action discrimination suit would scare them all into letting us get treated again, huh?
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Postby blossom » Mon May 17, 2010 7:35 pm

i have heard some talk of that but nothing solid. i guess in canada since it is universal care you could go after them i don't know. who would you sue? the irb? the neuro.'s? the ms societies? the drug co.'s? seems they all have played a part. like you some of the stories out there are terrible. the guy in the wheelchair with ccsvi sign that wasn't allowed to participate in the ms walk because of his sign got me. discrimination for sure. my one friend just had a stent put in for the heart, another for leg vein problem on and on. but i can't even get a test let alone treated. yes, i feel discriminated against amongst other things. maybe keep our own attorney's phone no. on speed dial.
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Postby BooBear » Tue May 18, 2010 3:10 am

Blossum, I would have no idea who to sue, either. Clearly, though, something has to be done.

There is a clear delineation for MS patients with regard to this treatment. As you accurately point out, you could get varicose veins treated without issue, but you can't get tested for CCSVI.

Stories like the one I posted to start this thread demonstrate all the angles (legal, financial, etc) that are working against this community. As patients, we should have the right to treatments that can make us better.

Unfortunately, we have big pharma concerned about their profits, neuros concerned about their reputation (and, frankly, recurring revenue from us) and attorneys concerned over lawsuits. What we need is more voices that are concerned about us...at least in Canada they are holding meetings to discuss the issue. I have not seen nearly the effort here in the U.S. from the government, AMA, or any other major body to move this forward.

While the U.S. MS society will "accelerate" funding for trials, we have yet to see much from them- and several posters report that MS Society local meetings are barely touching the subject.
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Postby belsadie » Tue May 18, 2010 5:07 am

Good Morning All,
I researched the ADA for us, Americans, and found this quote which hit home,
"The Rehabilitation Act prohibits discrimination on the basis of disability in programs conducted by Federal agencies, in programs receiving Federal financial assistance..."How many hospitals don't receive SOME form of Federal assistance? This maybe an avenue that could be taken if hospitals keep closing down our access to the L procedure.........oops sorry. Can't use that reference....to MRV, venograms, venoplasty...there that's better
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Postby BooBear » Tue May 18, 2010 8:59 am

Hmmm- that is an interesting angle, Belsadie. I think you may be onto something.

MS is a recognized disability, so we would qualify. I would suppose that the counterargument would be one that centers on the unapproved nature of the treatment for MS, but that is not our argument.

Our argument would be that we have a recognized vascular condition that is not getting treatment when others would have treatment.

There may be something there.
Three veins angioplastied.  One renewed life.  
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Postby rssugg » Tue May 18, 2010 9:28 am

good find!
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Postby Brightspot » Tue May 18, 2010 10:51 am

In Canada it is a violation of human rights legislation to deny a service (medical treatment for a vascular problem) to a person based on the fact that they are a member of a group of persons defined in the act. Disabled persons (ie people with MS) are covered by this legislation.

The Canada Health Act dictates that necessary medical services are made available to citizens on the basis on need. The federal government distributes money for health care to the provincers. All provinces are in violation of the Canada Health act.
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Postby BELOU » Tue May 18, 2010 10:57 am

We all agree on that but nothing changes... Why? In Quebec they even closed the only screening facility. That might take another year I guess. Those people at MSS ask for more dollars but let the College des médecins to go ahead and close the Westmount clinics. I'm totallly discouraged and look outside Canada for a diagnostic and treatment. No way I'm waiting another year.

If CCSVI is the issue, let me tell you that they will come out in a few years saying that they had no other choices and blablabla...

Pathetic.
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Postby fogdweller » Tue May 18, 2010 12:56 pm

belsadie wrote:Good Morning All,
I researched the ADA for us, Americans, and found this quote which hit home,
"The Rehabilitation Act prohibits discrimination on the basis of disability in programs conducted by Federal agencies, in programs receiving Federal financial assistance..."How many hospitals don't receive SOME form of Federal assistance? This maybe an avenue that could be taken if hospitals keep closing down our access to the L procedure.........oops sorry. Can't use that reference....to MRV, venograms, venoplasty...there that's better


Good idea. Any lawyers out there with MS and time on their hands because they can't get treated?
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Postby blossom » Tue May 18, 2010 2:54 pm

this bs has my blood pressure going nuts and the unnecessary stress i know has even attributed to a more rapid decline. i went through a 10 yr. divorce and we were in court a lot. the sucker took it to the supreme court. i hung in there ms and all. i swore i would not even want a traffic ticket to have to deal with. but, as i told him WHEN A PERSON HAS LOST EVERYTHING --WHAT ELSE IS THERE TO LOOSE!!. i just want what is right and get the medical care that they all know is there and THEY KNOW IT IS HELPING PEOPLE. none of us want to be in court-we're sick, tired, you name it. all we want is to be treated fairly. but, if that's what it takes that's what it takes. look-our civil rights, discrimination, witholding med. treatment, you name it. grrrrrrrrrrrrrrrr!!!
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Postby mmcc » Tue May 18, 2010 6:56 pm

You can't sue over being denied an EXPERIMENTAL treatment - and that's what the procedure is. There are a whole lot of slow and cumbersome steps which have to be gone through in order to run clinical trials - and there should be -- many drugs never make it to the market place because the clinical trials find them unsafe or ineffective - even some MS drugs which showed great promise in early trials.

Since so many are bound a determined to trash Tysabri, remember how that went -- Thousands of people took if for almost 2 years before anyone developed PML. It was pulled for more than a year and then allowed back on the market, but only with very close REQUIRED monitorring and a serious warning and consent requirements stating that the patient was made aware of the risks.

The stated risk is 1 in 1,000 of getting PML - and currently, several years later, the risk is not that high yet. (That frequently quoted number of 50 which keeps being repeated here is NOT accurate).

Lets see the data on the procedures which have been done overseas, other than the original doctor's test on 65 people - and HE says it needs further testing. The only reputable American hospital to try the procedure using stents stopped pretty fast when they determined the risk of stents was too high. Stanford obviously thought that stenting was worth the risk of trying, but they themselves discovered pretty fast that they didn't think it was, at least not now.

If 65 people had taken Tysabri for less than 2 years, would you have proclaimed it safe and effective? On the flip side, if you were one of the people taking it after it had gone through the clinical trials but before the first PML case was discoverd, and you developed PML would you have sued? Be honest.

In spite of the fact that many of us lobbied hard and testified for the right to take the risk of taking Tysabri and that it has helped thousands of people and had been tested on many people for a long time, some of you seem to object to that option being available, but want the venography offered as a standard medical treatment with almost no testing.

I am going to have the procedure in 2 weeks, but I consider myself a guinea pig and am willing to take the risk.

Its kind of disingenuous to scream about the pharmaceutical companies being partly responsible for not letting the procedure be done as a standard medical procedure. The pharmaceutical companies would love to be able to be held to weaker standards and put thier products on the market faster.

As to the insurance companies -- I have had my share of fights with them, as many of us have, but they are run for profit. As soon as the procedure is tested and approved, they would have to be insane not to have MSers have it done. Common sense - the drugs many of us are on cost $1500 - $5000 a month (not counting symptom drugs).

If the procedure works, why would they not prefer to pay a few thousand to have it done if it means that they would save the $5,000 a month ($60,000 a year) they are paying for my, and others', drugs. And that is what we all hope will prove to be true - that the procedure will halt progression, let us improve, and possibly even offer a cure.

Insurance companies are not run for good or evil - they are run to make money like any other business. They are not going to choose to pay $60,000 a year if paying $6,000 once or twice becomes an option.

As to doctors being stopped from doing the procedure - that's hardly a surprise - too many times doctors get sued for a bad outcome, even when they did not neccessarily act incorrectly or unprofessionally. Doctors should be held liable for gross mistakes, but we all know that many times people with a bad outcome sue because of the bad outcome. And being sued is expensive, no matter who wins.

Juries that award the penalties are people just like us. I don't know the answer --- I want patients who are damaged due to unproffesional care to be able to sue, but I also think that when things reach the point where doctors stop practicing or are unwilling to take chances (like with the procedure) because they can't afford the insurance premiums that things have gone too far - ob/gyn's being an example.
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