NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)
-   -   Biogen CEO Comments on Tysabri (https://www.neurotalk.org/multiple-sclerosis/41663-biogen-ceo-comments-tysabri.html)

Harry Z 03-19-2008 10:53 PM

Biogen CEO Comments on Tysabri
 
Please read this link and see what James Mullen, CEO of Biogen was quoted as saying about Tysabri and PML.

http://www.bizjournals.com/triangle/...7/daily17.html

This has to be a little disturbing to say the least.

Harry

Erin524 03-19-2008 11:04 PM

I'd rather drink the worm cocktail than take Tysabri after reading that.

Heck, I'd drink the worm cocktail that they're testing right now if it would make the numb symptoms go away.

tovaxin_lab_rat 03-19-2008 11:10 PM

Evidently, he doesn't want much Tysabri sold anymore...it would be interesting to know what evidence he has to base his remarks on...

Anyone check with the SEC to see if he has filed to sell any large chunks of Biogen stock in the last 45 days?

lady_express_44 03-20-2008 10:59 AM

Quote:

Originally Posted by Av8rgirl (Post 240636)
Evidently, he doesn't want much Tysabri sold anymore...it would be interesting to know what evidence he has to base his remarks on...

Anyone check with the SEC to see if he has filed to sell any large chunks of Biogen stock in the last 45 days?


He is likely to have more evidence then anyone else would. ;)

Someone on another forum mentioned execs selling off shares recently, but there are always a lot of rumors floating around (that are untrue!).

They have always warned that they didn't have any idea whether additional PML cases would surface over time, so perhaps this is just the same old message.

Cherie

sugarboo 03-20-2008 11:28 AM

Quote:

Originally Posted by Av8rgirl (Post 240636)
Evidently, he doesn't want much Tysabri sold anymore...it would be interesting to know what evidence he has to base his remarks on...

Anyone check with the SEC to see if he has filed to sell any large chunks of Biogen stock in the last 45 days?

Stocks happen to be my cup of tea....take a look:

http://www.secform4.com/insider-trading/875045.htm

They've been selling consistantly making millions.

Infact; Institutional ownership is huge, many making millions off this company and insiders made 49 different trades just in the past 3 months!

http://www.nasdaq.com/asp/Holdings.a...&selected=BIIB

EDIT: Chart: They must have known back in December that they had a bad feeling about it. Granted, the market has been bad, but strong companies are surviving. They've lost over $30 a share since Dec 07.

http://finance.yahoo.com/q/bc?s=BIIB

Sorry, they spilt 2 for 1 in December....just keeping with truth.....

tovaxin_lab_rat 03-20-2008 12:26 PM

I am and always have been a big advocate for Tysabri. My comment was tongue in cheek...any executive, member of the board of directors must by law file with the SEC their intent at least 45 days in advance of selling stock in their company...

As I originally wanted to post, and now will, just because Mr Mullen is the CEO doesn't mean he knows everything that is going on within the company.

CEOs are sometimes the last to know about negative things that are going on within their company, but are still responsible for what happens on their watch.

I still wonder what motivates CEOs to say some of the things they say in public....afterall, there have been NO cases of PML and Tysabri since it's re-release. If he is going to make blanket statements like that then he should at least back it up with data. This is irresponsible on his part and/or the journalist reporting it if the "whole story" was not reported.

As is more likely the case, we, the public and the patients, will never know the whole story. :(

Harry Z 03-20-2008 02:03 PM

Quote:

As I originally wanted to post, and now will, just because Mr Mullen is the CEO doesn't mean he knows everything that is going on within the company.

CEOs are sometimes the last to know about negative things that are going on within their company, but are still responsible for what happens on their watch.

I still wonder what motivates CEOs to say some of the things they say in public....afterall, there have been NO cases of PML and Tysabri since it's re-release. If he is going to make blanket statements like that then he should at least back it up with data. This is irresponsible on his part and/or the journalist reporting it if the "whole story" was not reported.

As is more likely the case, we, the public and the patients, will never know the whole story. :(
James Mullen knows what needs to be known within Biogen and especially with Tysabri. Although there are no additional cases of PML that have been reported, that doesn't mean that there hasn't been. Rumours abound that other issues with Tysabri are brewing but until they are confirmed I will not say what they are.

Bottom line...I don't now and never have trusted what Biogen has told us from the beginning about Tysabri. I just hope that the MS patients that are using it don't end up with more problems that they already have with the disease.

Harry

sugarboo 03-20-2008 03:29 PM

Quote:

Originally Posted by Av8rgirl (Post 240926)
I am and always have been a big advocate for Tysabri. My comment was tongue in cheek...any executive, member of the board of directors must by law file with the SEC their intent at least 45 days in advance of selling stock in their company...

As I originally wanted to post, and now will, just because Mr Mullen is the CEO doesn't mean he knows everything that is going on within the company.

CEOs are sometimes the last to know about negative things that are going on within their company, but are still responsible for what happens on their watch.

I still wonder what motivates CEOs to say some of the things they say in public....afterall, there have been NO cases of PML and Tysabri since it's re-release. If he is going to make blanket statements like that then he should at least back it up with data. This is irresponsible on his part and/or the journalist reporting it if the "whole story" was not reported.

As is more likely the case, we, the public and the patients, will never know the whole story. :(

Not always true Cheryl...sorry :o....If a CEO or other exec wants to dump hundreds of thousands, or millions of shares, they must file their intent as you describe (Usually they will include in that statement what price they will sell at....usually at a much higher price than is currenly being quoted). However; they can sell at anytime in small batches, but it must be reported to the SEC the day they do it. When an Exec sells shares and then the investors find out, it usually causes the investors to freak out and dump what they have, all in the name of fear.

Brings the price down, and then everyone starts jumping in again....its a visious circle.

I'm evaluating the company and its stock, not Ty....From my research, Ty is the best bet for those with confirmed MS...and if I were to get such a dx, I'd be on the Ty train myself. It dosen't stop the Execs from making millions off of the patients as you can see by the links I posted. This would hold true for many companies tho, not just BIIB. (Biogen)

PS: Also note that Mullins is not one who sells frequently; a good sign in any company. They know whats going on with their products, the question is do they believe in them, dispite the knowledge. Every drug has side effects; as consumers we have to weigh those out and make the right choice for ourselves :) The CEOs have to come forword with pertinent information, even if its scary, in order to protect the company from suits. I'd guess thats what was behind this statement.

bluenurse 03-20-2008 04:00 PM

I read that article about Tysabri a couple of days ago. Interesting, the street did not react to those comments. BIIB or ELN did not take big hits(other than the market in general). I think the market anticipates a case of PML, because the original black box warning stated a 1 in 1000 chance.

Also ,I think there was alot of (insider) selling activity in BIIB the first part of the year because of a possible buy out of BIIB, which didn't happen.

I do agree that it was not one of the smartest statements to make, I hope he didn't have any reason to throw out that warning.

My earnest hope is that Tysabri continues to be the drug that so many people are having great sucess with!! We don't want any bad news!!!

sugarboo 03-20-2008 04:10 PM

Thats right, I do remember hearing that nurse! Its also a bear's market so anyone who could make a buck should do it. I think Exec's have every right to sell. They have needs too (like a new yacht :rolleyes: or a child getting married, or any reason under the sun). I personally don't fret when an exec sells, but I am wary of massive and consistant selling. Price manipulation by corporate is a bad thing for small investors who lose everything overnight.

Thanks for the reminder on the possible sell...and its important to remember that stocks go up and down, for many reasons, at the drop of a hat. Biogen has a good reputation and as a result, likely that's what forced them to do a 2for 1 split. It usually settles the stock down and makes it a safer investment, removes the violent swings, which were obviouse looking at this chart, it was growing way to fast!

Off to chores :cool:

tovaxin_lab_rat 03-20-2008 04:12 PM

Quote:

Originally Posted by Harry Z (Post 240981)
James Mullen knows what needs to be known within Biogen and especially with Tysabri. Although there are no additional cases of PML that have been reported, that doesn't mean that there hasn't been. Rumours abound that other issues with Tysabri are brewing but until they are confirmed I will not say what they are.

Bottom line...I don't now and never have trusted what Biogen has told us from the beginning about Tysabri. I just hope that the MS patients that are using it don't end up with more problems that they already have with the disease.

Harry

Harry

Then why bother posting anything? :confused:

It's unsubstantiated posts like this that get the rumormongers going. If you have something substantial to post then post it...don't post something -- gee I heard...and let it go unsupported. Anyone can do that. I could post that I overheard two neurologists talking about a patient in the doctor's lounge yada yada yada and it would be worthless gossip. :rolleyes:

The whole point of the TOUCH program is to track and report PML. If you think for one minute that there has been a case of PML and Tysabri unreported, then I do believe you are WRONG. And that, Harry, is something you can take to the bank and cash. I worked with the FDA and the RiskMAP committee to make sure the tracking procedure works...if you have a problem with the system you should be taking it up with the committee...not making innuendo here.

This post of yours is inflammatory and totally unnecessary, in my opinion. :( In other words, I disagree with your comments. I can back mine up with names, dates, and reports. Can you? I didn't think so.

Harry Z 03-20-2008 06:45 PM

Quote:

Originally Posted by Av8rgirl (Post 241057)
Harry

Then why bother posting anything? :confused:

It's unsubstantiated posts like this that get the rumormongers going. If you have something substantial to post then post it...don't post something -- gee I heard...and let it go unsupported. Anyone can do that. I could post that I overheard two neurologists talking about a patient in the doctor's lounge yada yada yada and it would be worthless gossip. :rolleyes:

The whole point of the TOUCH program is to track and report PML. If you think for one minute that there has been a case of PML and Tysabri unreported, then I do believe you are WRONG. And that, Harry, is something you can take to the bank and cash. I worked with the FDA and the RiskMAP committee to make sure the tracking procedure works...if you have a problem with the system you should be taking it up with the committee...not making innuendo here.

This post of yours is inflammatory and totally unnecessary, in my opinion. :( In other words, I disagree with your comments. I can back mine up with names, dates, and reports. Can you? I didn't think so.

Everyone is entitled to their opinion Cheryl.

I can remember when Tysabri was first making the headlines a few years ago and I and a few other people on the net were making similar comments about the drug. I was called some very nasty names for even daring to suggest that there were some possible problems with it. How dare I infer, without documentation, this drug might be dangerous?! Almost daily I was attacked.

So what happens...Tysabri gets pulled from the market because of PML and all the nasty name calling comes to an abrupt halt! And those who had targeted me for months suddenly disappeared from the forums.

Now I know it is hard for Tysabri cheerleaders to hear this kind of concern but do you think that I enjoy stating this kind of information? My concern here is the possibility that many MS patients may end up suffering even more from their disease if what I hear about the drug materializes. Because of my following MS for decades, I have seen far too many people suffer from this disease too often because the drug companies involved with their medications don't tell us the "con" side of them.

In the many years that I have followed MS, I have made a number of contacts in this area and end up getting bits and pieces of information. You say that I am irresponsible for making unproven comments about what I hear but what about the drug companies that simply don't tell us about the very known problems that they keep from the public?

Visit several of the MS websites out there, Cheryl, and you just may read about some of the things that I refer to. You say that my post was inflammatory and unnecessary...don't forget, there are always two sides to every story and I sometimes tell the side that some people don't like to hear.

Harry

Riverwild 03-20-2008 08:44 PM

For the record:

Harry Z does not have MS

Harry Z was married and his wife had MS. She died. She never took Tysabri.

Harry Z has never had to make a choice as to how he would treat HIS MS.

Harry Z comes in with rumor-mongering, no data, spreading the spew from Biogen's Jim Mullen, someone who has a large stake in seeing Tysabri fail.

Biogen Idec owns AVONEX. Biogen Idec did NOT develop Tysabri.

Elan developed Tysabri. Because they are an Irish drug company, they had to have an American company to partner with during the process of getting Tysabri approved. Biogen jumped at the chance. WHY? Because they saw what it could do. They had something BIG to lose. AVONEX.

Biogen Idec was the company that insisted that a combination trial be run so they could have their pie and eat it too, hence the Tysabri/Avonex debacle.

NO MS PATIENT HAS DIED (IN MORE THAN 20 YEARS IT TOOK TO DEVELOP THIS DRUG) FROM PML.

THERE HAVE BEEN NO CASES OF PML SINCE THE DRUG WAS RETURNED TO MARKET UNDER THE TOUCH PROGRAM.

People with MS will be what drives this drug. No amount of marketing will do it. When someone gets out of their wheelchair and walks for the first time in years, when a mother can run with her children again, when a father gets to walk his daughter down the aisle, when someone can see again, when children no longer have to care for their affected parents, the word spreads further. ++100,000 patients by 2010.

Tysabri works. It may not work for everyone, but it works for me. It works for a lot of other people. After suffering from relapse after relapse, almost quarterly since being diagnosed in 2004, I haven't had a relapse since May 25th, 2007. I have regained my vision, my fatigue has lessened, my spasticity has lessened, I had no new lesions, no enhancing lesions and many of my old lesions were smaller or GONE. I can see a 14 MM LESION shrinking. I had a 12 MM lesion that is gone. My brain looked like a constellation. Now it looks like what you can see in the city, only a few stars in the sky. I fully expect my next MRI will be even better. I have had NO side effects, NO concerns to report and I have NEVER looked back and missed those relapses, that increasing progression that was robbing me of everything I held dear.

No one is forced to take Tysabri. It's a CHOICE. You can inject water if you so choose. Pick your own tool. Don't try to "PROTECT" me from my choice. I'm aware of risk/benefit ratios for each and every choice I make.

I'll take Tysabri, and faithfully send my thank you card every month to Ted Yednock and his team, letting them know that for THIS person with MS, Tysabri works.

I am done with this thread.

SallyC 03-20-2008 09:41 PM

RW, I understand your enthusiasm, I really really do, but please do not be too unkind to Harry. I do believe he is just a worry wort and doesn't mean to poo poo your personal medical choice.

:grouphug:

lady_express_44 03-20-2008 09:58 PM

Quote:

Originally Posted by Riverwild (Post 241233)
For the record:

Harry Z does not have MS

Harry Z was married and his wife had MS. She died. She never took Tysabri.

Harry Z has never had to make a choice as to how he would treat HIS MS.

Harry Z comes in with rumor-mongering, no data, spreading the spew from Biogen's Jim Mullen, someone who has a large stake in seeing Tysabri fail.


Wow, RW! :eek: When defensiveness stoops to this level, it is not a pretty sight.

Harry just lost his wife to MS not very long ago, and I think it was totally unnecessary to be insensitive to that in your response. You could make the same point without such low blows, and nothing you said changes the amount of knowledge he has.

Cherie

sugarboo 03-20-2008 10:53 PM

I didn't see one low blow, only facts.

tovaxin_lab_rat 03-20-2008 11:08 PM

Harry I appreciate your comment...I honestly do. I understand from where you come.

I have been on the receiving end of those very same comments...the hateful, snide, nasty comments from the those who only wanted the negative put forth about Tysabri. I was challenged with every post I made. Even my motives for testifying were questioned.

I testified at the FDA hearings to bring Tysabri back on the market and then was denied after several appeals by my insurance company b/c I did not meet the criteria under which I helped draft. Pretty ugly. But, bottom line, I still believe in this drug. I sat on the FDA RiskMAP panel last year to review the TOUCH protocol for Tysabri.

Having said all that, I am not a big fan of drug company executives who line their pockets with the profits of patients like us who keep them driving their big cars and live in their big houses.

My only criticism is unsupported comments that are made on forums that are widely read by MS patients that scare them for no reason. As has been said, there are NO documented cases of PML. There are other adverse reactions/events associated with Tysabri that have been reported but to date, NO PML has been associated with any deaths since the re-release of this drug in any MS patient.

Mr. Mullen's comments are irresponsible. Your post only adds flames to the fire. If you have proof to substantiate his article, then by all means, please provide it. Doctors who treat patients on Tysbari are required by law to report these cases. Or even if they suspect a case, there is a plan in place for investigation. That is my point.

I am not on Tysabri. I am not a stockholder in either Biogen or Elan. I have nothing to gain or lose by posting this information. I am an advocate FOR MS Patients and their choice for whatever DMT is best to treat their form of MS.

I am a lab rat for Tovaxin. It's a competitor, hopefully. ;)

I look at the big picture and want more than ever for more treatments and research to be available for all people with MS. But if rumors abound and people are afraid to take medications, what's the point? We might as well just dump them all in an incinerator and have a bonfire....the EPA might have a problem with that, but it would certainly send a clear signal!

I think we are on the same page, Harry...just approaching it differently.

;)

tovaxin_lab_rat 03-20-2008 11:13 PM

Quote:

Originally Posted by lady_express_44 (Post 241296)
Wow, RW! :eek: When defensiveness stoops to this level, it is not a pretty sight.

Harry just lost his wife to MS not very long ago, and I think it was totally unnecessary to be insensitive to that in your response. You could make the same point without such low blows, and nothing you said changes the amount of knowledge he has.

Cherie

RW has a lot of information about Tysabri that a lot of other people do not have. She made some very good points and clarified some points that some people probably were not aware of.

In my opinion, there were no low blows...just facts.

Tysabri has always been a hot topic no matter what forum it is discussed on...right? Especially between those who do not take it and those who do...that is a given.

This article posted by Mr Mullen is bound to create a whole new can of worms. As I said, I cannot for the life of me understand what would motiviate him to allow that interview...but I think RW made some very good points....;)

lady_express_44 03-20-2008 11:53 PM

Quote:

Originally Posted by Av8rgirl (Post 241341)
RW has a lot of information about Tysabri that a lot of other people do not have. She made some very good points and clarified some points that some people probably were not aware of.


The personal points, especially bringing up the death of Harry's wife (which would obviously be a very sensitive topic to ANYONE who would has just lost a loved one) was absolutely irrelevant and unnecessay. The same points could have been made without these personal digs.

Cherie

RedPenguins 03-21-2008 03:08 AM

I *love* this stuff....debate away....but keep it clean?
 
this is interesting to me - I know we all have strong opinions about the meds - but it just strikes me as odd that Ty is really so controversial! First off, no one is ever forced onto it. Thus - that being the case -if you have a problem with Ty and this from of tx, well that's all fine and dandy - you don't have to take it. but why the need to poke holes in it or make any comments about it against it - unless it is someone sharing a personal experience with Ty. Now that I'd listen to openly. But at the end of the day, we all need to make our own decisions.

My decision right now is that I hate all of it. My doctor, people at TOUCH, Blue Shield.


~Keri

Harry Z 03-21-2008 09:41 AM

RW,

Thank you for reminding me of my wife's death at the hands of MS. I guess experiencing her fight with the disease for 35 years as well as watching my uncle fight the disease (and lose) doesn't give me any insight at all with what has gone on in this area in the past 4 decades!

"Spreading the spew from Biogen's Jim Mullen"....now that's an interesting take on his interview. The man who holds all the cards on what and how happens to Tysabri making those comments. You have just made my entire point about Biogen and their "concern" for the welfare of MS patients. Their concern, controlled by Mullen, has little or nothing to do with MS patients but everything to do with making as much money as he can for Biogen and eventually himself. That's EXACTLY why I don't trust what Biogen tells us about Tysabri and why I mentioned there are other issues brewing with this drug. His audience in that interview was the investment world and he told them not to worry about any new PML cases which were expected! And you accuse me of "rumour mongering"?!!!

Quote:

Elan developed Tysabri. Because they are an Irish drug company, they had to have an American company to partner with during the process of getting Tysabri approved. Biogen jumped at the chance. WHY? Because they saw what it could do. They had something BIG to lose. AVONEX.
Yep, they saw what it could do alright...potentially make them $ Billions. BEFORE the drug was even approved the first time, Biogen partially outlined their marketing strategy on the internet, showing how they would quickly overtake the MS medication world market share. They were cautioned many times by the docs who discovered the drug about its potential problems but that didn't stop their very aggressive campaign.

And why would a responsible drug company combine a powerful drug like Tysabri with Avonex without knowing any long term safety data about the use of Tysabri on its own? Again, we see Biogen's concern about the health of MS patients!!

So now we are supposed to believe Biogen's data when it comes to Tysabri??!! During the Tysabri trials in the MS clinic here, my wife's neurologist point blank told me that Biogen's reputation in the MS clinical world was one that was not trusted!!

Quote:

People with MS will be what drives this drug. No amount of marketing will do it.
If you believe that then you are totally out of touch with reality. The vast majority of MS patients use what their docs tell them to use.

Quote:

When someone gets out of their wheelchair and walks for the first time in years, when a mother can run with her children again, when a father gets to walk his daughter down the aisle, when someone can see again, when children no longer have to care for their affected parents, the word spreads further. ++100,000 patients by 2010.
This happens to MS patients who have used, Betaseron, Avonex, Rebif, Copaxone, Bee stings, Prokarin, Novantrone,LDN, stem cell transplants, Noni juice, etc etc etc. The results of various MS medications are all over the map just the same as the disease affects its victims. And like you said, "as the word spreads further"....the marketing and sales word of Biogen!!

I'm glad that Tysabri works for you but I have also read comments from users who have had to stop using the drug. They ran into problems that they weren't told about prior to starting the drug. My wife used Prokarin for 7 years and she ended up with many of the same results that you did on Tysabri...and she had SPMS.

Quote:

No one is forced to take Tysabri. It's a CHOICE. You can inject water if you so choose. Pick your own tool. Don't try to "PROTECT" me from my choice. I'm aware of risk/benefit ratios for each and every choice I make.
Nobody here is trying to "protect" you or anyone here from making a choice on which medication you want to use. But please don't try and attack a viewpoint from another perspective and use personal comments toward me in doing so. Like I have said, everyone is entitled to an opinion.

Quote:

I am done with this thread.
Well, at least there is one good result!

Harry

Harry Z 03-21-2008 09:43 AM

Quote:

Originally Posted by greenjeans (Post 241334)
I didn't see one low blow, only facts.

Facts, like anything else, are in the eyes of the beholder!

Harry

sugarboo 03-21-2008 10:04 AM

I'm sorry for your loss :hug: I did detect you were viewing things from a different perspective, and knowing that helped me understand more about you. It was not a low blow, but facts about who you are.


A dear friend whom I worked with for years lost his wife just last year to MS. He is currenly an alcoholic and I think he will never get over his loss. I also lost a SIL to MS in the 80s, she was only in her 30s.

I agree that corporate wealth, even shareholder wealth, is at the hands of those who MUST use medications for a disease such as MS. It's a damn shame, but without the money, they won't have the resources to keep finding new and better drugs for those who suffer. Like I said, its a visious circle for all involved.

If Ty is helping people like RW, than it brings hope. It is giving health. I understand you are mourning and I can only offer my condolences to you. Biogen has a drug that may offer life (not just quality of life) to those using it. There's enough fear with MS...you are living proof of the ultimate price. Let those who have a definate dx of MS choose their path without bringing on panic.

Peace and love to you!
Gj

Snoopy 03-21-2008 10:52 AM

Quote:

Originally Posted by Riverwild (Post 241233)
For the record:

Harry Z does not have MS

Harry Z was married and his wife had MS. She died. She never took Tysabri.

Harry Z has never had to make a choice as to how he would treat HIS MS.

Harry Z comes in with rumor-mongering, no data, spreading the spew from Biogen's Jim Mullen, someone who has a large stake in seeing Tysabri fail.


I think this was uncalled for and totally inappropriate.

Harry has been around NeuroTalk for a long time and I have never read anything from him that deserves this kind of response. Harry has suffered with this disease because of his wife just like our own families do.

Harry Z 03-21-2008 01:23 PM

Cheryl,

Quote:

Originally Posted by Av8rgirl (Post 241340)
Harry I appreciate your comment...I honestly do. I understand from where you come.

Thanks...your comment is appreciated.

Quote:

Having said all that, I am not a big fan of drug company executives who line their pockets with the profits of patients like us who keep them driving their big cars and live in their big houses.
While I don't object to these execs trying to make as much money as they can, I have a great deal of difficulty when they do so over the backs of MS or any other patient who is relying on the information they provide the public in doing so. I couldn't believe reading Mullen's comments to the investment world, that a few cases of PML wouldn't give Biogen any problems. Perhaps the comments were taken out of context but Mullen, in his position, should know what can happen in this kind of interview.

I can understand your criticism of unsupported comments but those who know me and have followed my comments on the forums about MS know that when I state something along these lines, I do so using sources that are usually quite reliable.

Quote:

Mr. Mullen's comments are irresponsible. Your post only adds flames to the fire
Of course they are irresponsible and my post was to simply point out that here is the man who controls the company that decides the journey of Tysabri. Are you saying that this article should not be posted? Should we not provide all sides of Biogen, Mullen and Tysabri so the readers on this forum have the opportunity to decide what they want to believe or not in their decision making? I believe that the readers should get different perspectives on all of this. I guess you feel differently and of course that is certainly your perogative.

I also don't think that it is me who has to provide proof about this article. The publisher and reporter are responsible for that and it is eventually Mullen who has to answer the critics. Don't shoot me, the messenger:winky:

Quote:

I look at the big picture and want more than ever for more treatments and research to be available for all people with MS. But if rumors abound and people are afraid to take medications, what's the point?
I think that the vast majority of people on these forums have the ability to decide what information they place more weight on in making their decisions in dealing with their MS. But I also believe that these people should hear more than one point of view. We already know that totally trusting Biogen for all the information isn't a viable answer....just seeing James Mullen in action creates doubt!

Quote:

I think we are on the same page, Harry...just approaching it differently.
Yes, you are totally correct on that statement. Those who have followed my posts over the past few years know that I am not a fan of Biogen and how they have handled the entire introduction of Tysabri. So that certainly dictates my approach to how I post information. I know that many people don't agree with my method and I don't expect them to do so. But one can disagree, like yourself, and still state that without having to resort to some nasty comments. And that gives me respect for you.

Take care.

Harry

Harry Z 03-21-2008 02:18 PM

GJ,

Quote:

Originally Posted by greenjeans (Post 241541)
I'm sorry for your loss :hug: I did detect you were viewing things from a different perspective, and knowing that helped me understand more about you. It was not a low blow, but facts about who you are

As you now know by reading some of the subsequent messages, people will take what you said differently. That's one of the problems about internet communications...you never are totally sure the full meaning behind what some else is writing. Although I'm not just sure what purpose there was in mentioning my wife's death and the fact that I don't have MS and have never had to make a decision on what drug to possibly use.

Quote:

A dear friend whom I worked with for years lost his wife just last year to MS. He is currenly an alcoholic and I think he will never get over his loss. I also lost a SIL to MS in the 80s, she was only in her 30s.
This just proves how much MS can not only affect the patient but also the spouse or any other relative. Just because someone doesn't have the disease doesn't mean they don't understand something about it. I sure hope your friend gest the help he needs...otherwise MS will indirectly end up causing him untold problems

Quote:

I agree that corporate wealth, even shareholder wealth, is at the hands of those who MUST use medications for a disease such as MS. It's a damn shame, but without the money, they won't have the resources to keep finding new and better drugs for those who suffer. Like I said, its a visious circle for all involved.
Like it or not, MS drug development is in the hands of big pharma. But that doesn't mean it has to operate like the Biogen's of the world. Read about how BioMS has developed and currently testing their SPMS drug and one can see the difference of what is possible.

I don't dispute that Tysabri is helping several users. That's great. But the drug is powerful and it alters how the way your immune system works within the brain. I don't believe that Biogen took the proper precautions in introducing the drug and thus its history of related problems. And from what I have been told, there may be more problems. I just wish that Biogen would be more above board in their handling of the drug and that hasn't happened.

My intention is not to place fear in the thoughts of a MS patient who is contemplating the use of Tysabri. I just want people to do all the research about this drug and not just believe what Biogen promotes all the time.

Quote:

Peace and love to you!
Thank you...and the same back to you.


Harry

tovaxin_lab_rat 03-21-2008 04:41 PM

Quote:

Originally Posted by Harry Z
Are you saying that this article should not be posted? Should we not provide all sides of Biogen, Mullen and Tysabri so the readers on this forum have the opportunity to decide what they want to believe or not in their decision making? I believe that the readers should get different perspectives on all of this. I guess you feel differently and of course that is certainly your perogative.

That is not what I am saying. I think the article should be posted. That is not what I am questioning at all. ;)

My only criticism is unsupported comments that are made on forums that are widely read by MS patients that scare them for no reason.

sugarboo 03-21-2008 05:23 PM

Hi Harry,
Unfortunately this friend retired and stays home. I do hope he comes out of his depression before he kills himself. DH reports that when he saw him last, it didn't look good. He lived for his wife of some 35-40 years, had no children and its heartbreaking to say the least.

FWIW: I understand where you are coming from. Nice to meet you ;)

Harry Z 03-21-2008 08:44 PM

Quote:

I]My only criticism is unsupported comments that are made on forums that are widely read by MS patients that scare them for no reason. [/I]
Sometimes one isn't able to provide the details of sources for various reasons. I'm not trying to scare anyone. Mullen, on the other hand, certainly has created a hornet's nest with his interview.

Harry

Harry Z 03-21-2008 08:51 PM

Quote:

Originally Posted by greenjeans (Post 241839)
Hi Harry,
Unfortunately this friend retired and stays home. I do hope he comes out of his depression before he kills himself. DH reports that when he saw him last, it didn't look good. He lived for his wife of some 35-40 years, had no children and its heartbreaking to say the least.

FWIW: I understand where you are coming from. Nice to meet you ;)

We were married for 32 years and we had no children...a decision made by the both us after discussing the situation with Marg's neurologist prior to getting married.

You are right in that your friend is in real danger because of the depression. Gee I hope he gets the help he needs before it is too late.

Very fortunately I have been able to manage my grieving process fairly well since Marg died. I did a lot of things that kept me from becoming depressed and for that I am thankful.

Harry


All times are GMT -5. The time now is 05:28 AM.

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.