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Postby HarryZ » Fri Apr 27, 2007 12:32 pm

Hi Bob,

This is not meant to be critical Harry but knowing your long dislike for Tysabri I should have realized that you would read


Actually, it's not that I don't like Tysabri (after all it's only a man made drug :-)) ) it's Biogen's entire handling of the drug's introduction that has left me with quite a distaste for the company.

The argument that Avonex has otherwise been involved in PML incidence before is an easy and seemingly valid argument, but it isn't valid as might seem obvious.


I don't disagree with you on that but it was Biogen's own CEO, James Mullen, who made the protective comment about Avonex after Tysabri got pulled.

Before these Tysabri deaths it had been a long standing assumption that PML incidence is owed to oversuppression. Obviously at this time the only way the medical community can think of to handle these immune mediated diseases is to suppress the hell out of the entire immune system in attempts to minimize one faulty aspect.


And that information brings me to one big question....if the Biogen docs were aware of this situation (and you know they had to be) and not much was known about Tysabri's short and certainly not long term safety aspects, why on earth were they performing a trial that involved combining it with Avonex before the monotherapy trial was completed?
Several articles leaned towards marketing purposes for Avonex's benefit only and that's another reason why I am not a fan of Biogen.

Although you must feel that the initial incorrect judgement of cause of death for the crohn's patient was intentional but considering that about any of these immune mediated diseases are treated by suppressing the immune system...the more, the better, I think it's logical that PML deaths aren't nearly as uncommon as assumed and are COMMONLY misdiagnosed.


My concern with the Crohn's patient's death came from the information that was related to me on how Biogen dealt with the family and subsequent release of info surrounding the case. From what I was told, they tried to cover it up as much as possible to deflect any possible negative fallout on Tysabri. If you were to see it from the family's side, you would likely share my concern. They were indeed most upset with Biogen!

Under normal conditions autopsies are rarely every performed and when it's know that someone has stuggled with one of these diseases and immune suppression?? I imagine it's very, very seldom that anyone would question WHY they died.


Unless that person is involved in a clinical trial and something out of the ordinary happens...just as what happened to the Crohn's patient. He went from being relatively healthy to dying within 6 months or so.

I did check the Feb 28, 2008 New England Journal of Medicine and found that you were on the money in regards to the length of time which had passed since the Crohn's/PML patient was on....I think it was Imuran and Remicade.


Like I said, I didn't make up any of the info I have related about the Crohn's patient. It was supplied to me in detail. There is a lot more behind the scenes as well but I really don't think there is any purpose in discussing it in this thread.

Take care.

Harry
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Postby Lyon » Fri Apr 27, 2007 1:27 pm

Hi Harry,
HarryZ wrote:if the Biogen docs were aware of this situation (and you know they had to be) and not much was known about Tysabri's short and certainly not long term safety aspects, why on earth were they performing a trial that involved combining it with Avonex before the monotherapy trial was completed?
Several articles leaned towards marketing purposes for Avonex's benefit only and that's another reason why I am not a fan of Biogen.
Although I've been interested in the causes of the "autoimmune" diseases since the 1970's I've only been interested in the treatments since my wife was diagnosed early in 2006 so I have to admit that I what little I know about the Tysabri/PML situation was learned in retrospect.....I didn't get to view things as they happened and I think that does put me at a loss.

My concern with the Crohn's patient's death came from the information that was related to me on how Biogen dealt with the family and subsequent release of info surrounding the case. From what I was told, they tried to cover it up as much as possible to deflect any possible negative fallout on Tysabri. If you were to see it from the family's side, you would likely share my concern. They were indeed most upset with Biogen!
As I mentioned above, I didn't get to view it as it happened so I would have to believe that the original cause on the death certificate was an honest mistake and if there was a Biogen cover-up it had to have been after Biogen discovered that it was a case of PML. Even then I find it hard to believe that intelligent really would think they could keep something like that under cover in a situation involving that much scrutiny.

Although what MS patients need and want is a system looking for a "cure" in all quarters with "no holds barred", what they ended up with are profit driven, supply and demand drug companies.

I personally don't demonize the drug companies because they are only doing what they are intended to do, making a profit. I can't blame the drug companies anymore than I can blame my neighbor's dog for pooping on my lawn.

Even though what neither of them are doing is in my best interest, I can't hold it against them because they are both doing nothing more and nothing less than what they were intended to do.

Bob
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Postby HarryZ » Fri Apr 27, 2007 4:46 pm

Hi Bob,

Although I've been interested in the causes of the "autoimmune" diseases since the 1970's I've only been interested in the treatments since my wife was diagnosed early in 2006 so I have to admit that I what little I know about the Tysabri/PML situation was learned in retrospect.....I didn't get to view things as they happened and I think that does put me at a loss.


Up until your wife's diagnosis, you really wouldn't have a need to spend much time in looking at treatments and that's understandable. In my situation, I've been looking at treatments since the mid-60's when my uncle had the disease and that has certainly effected my thinking.

As I mentioned above, I didn't get to view it as it happened so I would have to believe that the original cause on the death certificate was an honest mistake and if there was a Biogen cover-up it had to have been after Biogen discovered that it was a case of PML. Even then I find it hard to believe that intelligent really would think they could keep something like that under cover in a situation involving that much scrutiny.


I thought pretty much the same way until I was provided with information that really changed my outlook on that case. And it came at a time when my dislike for Biogen/Elan was growing by leaps and bounds. I know there are always two sides to every story but when I was given the details about this one, I just shook my head!

Although what MS patients need and want is a system looking for a "cure" in all quarters with "no holds barred", what they ended up with are profit driven, supply and demand drug companies.


I've never heard it explained that way but you have just hit the proverbial nail on the head. I saw this situation developing in the late 70's and as the CRAB drugs started to appear in the early 90's and I attended a number of "information seminars" on them, I could see what was happening and it was exactly as you described.

I personally don't demonize the drug companies because they are only doing what they are intended to do, making a profit. I can't blame the drug companies anymore than I can blame my neighbor's dog for pooping on my lawn.


I certainly agree. When I lived in Toronto for many years, my next door neighbour was an operations manager for Eli Lilly. I certainly heard his side of the story when it came to developing drugs in the pharmaceutical world of competition. Having said that, I still don't like Biogen for how they introduced Tysabri and when my wife's neuro says out of the blue that they aren't trusted all that much in their data reporting, the feeling has a tendency to "stick".

Take care.

Harry
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Drug names for same substance

Postby lyndacarol » Fri Apr 27, 2007 6:50 pm

Imuran is the commercial name for azathioprine.
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