Institutional Review Boards (IRBs)

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

Institutional Review Boards (IRBs)

Postby David1949 » Tue Oct 12, 2010 11:21 am

It is my understanding that Institutional Review Boards at various hospitals around the United States are blocking doctors from doing the Liberation treatment. (If I am wrong about that I hope someone will correct me.) Being a liberty minded individual it seems rather unfair to me that a group of anonymous doctors can block MS patients from getting the only treatment that offers any hope of improving our condition. I’m thinking that perhaps we should start applying some pressure to them to change their position. The first thing we would need to do is find out who they are. Once unmasked, we can start flooding them with letters, emails and phone calls telling them we want Liberation to be allowed. We would not be asking them to do anything for us other than to get out of the way and allow doctors to do this procedure, if they want to.

What do others think about this idea?
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Postby Cece » Tue Oct 12, 2010 12:26 pm

I don't know, I think the availability for treatment at the stand-alone clinics is exploding at the moment.

The IRBs are there to protect the patients during research. CCSVI does need to be researched, we are actually less protected by going for treatment at stand-alone clinics that might be out for a buck and also with getting this treatment that does not even begin to have its best practices worked out.

I think a lot of this is between the doc and his own IRB, unfortunately.
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Postby David1949 » Tue Oct 12, 2010 1:23 pm

Cece wrote:I don't know, I think the availability for treatment at the stand-alone clinics is exploding at the moment.


Where are they? I can't find any here in Michigan.

Cece wrote:The IRBs are there to protect the patients during research.

Any chance they are out to protect the interests of the drug companies?

Cece wrote:CCSVI does need to be researched, we are actually less protected by going for treatment at stand-alone clinics that might be out for a buck

Aren't the neuros out for a buck? Aren't the drug companies out for a buck?


Cece wrote:...and also with getting this treatment that does not even begin to have its best practices worked out.


I agree that the best practices have not been worked out yet. But how long do we want to wait for that? The Albany study won't be done for two years. How many of us will die during that time? How much worse off will the rest of us be in two years? Even if Liberation is successful in stopping the progress of the disease, will it be able to reverse the additional damage that will occur in two years?

I think we all acknowledge that there is risk in getting Liberation before all the studies are done, but there is also risk in not getting Liberated ASAP. All of the Liberation success stories (as well as the failures) have occurred with current state of the art practices. The decision to take the chance on Liberation now should be up to the patient. But if the IRB boards block the procedure then it's up to them and not the patient. That forces patients to travel long distances to get Liberation. And that increases the cost, the discomfort of traveling and the problem of what to do if follow up visits are required.

I think it's a decision that each person needs to make for himself, based on his own situation and an understanding of the potential benefits and risks.
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