This Is MS Multiple Sclerosis Community: Knowledge & Support

Art,



Therein lies the difference. I don't see ANYWHERE that the NMSS "implied" any such thing at any time.

Where are YOU getting that impression? (i.e. that the NMSS, via their PR people, is saying that they did the research that lead to the creation of ANYTHING?) I saw where they said they were involved with a researcher who did PART of some initial work, which then was picked up by another party, which was then picked up by Biogen, which then led to the marketing of a drug! Uh...........that's quite a few hands it went down there.

I'm sorry..........I don't come away with the impression that the NMSS has ever said or even IMPLIED they ever were directly the reason why something came to market.



Deb

EDIT: Of course, I may have missed something. Please........show me where they have said or implied that, or inform me of when they might have verbally indicated that. I'm open to being proven incorrect with my interpretations.

SECOND EDIT: Oh, and just for clarification, in case anyone is wondering. It was NOT just a "PR person" or public relations employee of the NMSS who was kind enough to participate in our question and answer session in another thread here.

Taken from the NMSS 2004 report (Posted on the news section of this site)



Whilst admittedly not claiming any direct responsibilty, sure looks like an attempt to share the credit to me.

Robin

_________________
Do not go gentle into that good night. Rage, rage against the dying of the light.

Well, again, what they are saying there is true. The "approach" (not the "drug") WAS "first" (not "recently") "explored" (not "discovered") in "laboratory animal research" (not "human clinical trials") in "part" (not "completely" or "directly") with funds provided by the NMSS to Stanford investigators (again true.....Dr. Steinman and his collegues were from Stanford).

I guess the thing to do is not read something into a statement that just plain isn't there. Maybe it goes along with reading carefully.

Here's the difference:

They said:



NOT:



BIG difference to me. And easily seen. No "implications" there in their original statement at all.

Again, I guess we agree to disagree.

Nice to see you, Robin. Hope all is well.

Deb

EDIT: I forgot a part, so I just now added it, is all.

SECOND EDIT: And actually, they DO deserve SOME credit. They WERE involved, just not in as huge a way as some may be misinterpreting. But are they entitled to share "some" credit? Well, sure! The fact is, they DID provide funding (and their involvement) that helped Dr. Steinman (and his colleagues) to continue to lay the groundwork that allowed others to continue on. So, yes..........in my opinion, "history" and/or the originators of something do deserve sharing a little credit with the end result. Just don't let yourself get carried away in your own mind.

But that was Art's point. The wording of these things is crucial. Whatever the wording of the release 'actually' said, the implication was that the NMSS was involved in the creation of Tysabri. The truth is that they probably were, but claiming credit is a two edged sword. It goes back to my comment in another thread that the 2004 report read like a politicians speech, designed to give that warm fuzzy feeling, whilst at the same time admitting that nothing much has changed.

I'm fine by the way, thanks for asking, struggling back out of relapse and trying to work out which bits are still working....

I hope you're well
Robin

_________________
Do not go gentle into that good night. Rage, rage against the dying of the light.

That's great, Robin! (That you're feeling better, NOT that you had "another?" relapse. Should I express how that sort of "worries" me?)

I'm still doing great, thanks!! Feisty as ever, as you can probably see.

You know, I was re-reading our gray matter thread earlier today. Darn.......we were good! So anyway, it's coincidental to me that you showed up just now!

Anyway, again..........nice to see (?) you! Quit being such a stranger!

Deb

EDIT: The "we" expressed above also includes Wesley and the others who contributed to that gray matter thread.

Ya know..........I'd be more concerned about someone, such as Biogen, HOGGING all the credit for something. In my opinion, it shows a little more integrity, honesty and character, especially from the people who are making the most PROFIT off of it, to respectfully voluntarily share the credit with all those who either helped pave the way to the discovery or product, or to those who assisted in making it all possible.

Jeez, it wasn't even known by employees of Biogen that they didn't exactly do it all alone! I wonder how Dr. Elizabeth Wayner (naming only one person) feels about Biogen not making a respectful statement in their marketing campaigns about her contribution to Tysabri? Until THAT was stumbled upon and posted (in another thread), who all knew about that?

Just pondering..............

Anyway, if it is felt by anyone that someone or some entity of any sort is off-base at all for simply "mentioning" their "small" contribution to important progress, I would wonder why that person or entity felt they HAD to do so themselves in the first place?

And if they didn't mention their own contribution, wouldn't they continually be asked and/or accused of wasting money with nothing to show for it?

No win situation, I suppose.

Deb

But coincidentally while looking at something else I found this passage at the NMSS web site in the Patent Policy section of the Research Policies:

If any invention is made with the joint support of the Society and other organizations, it is expected that all organizations will defer to the policies of the grantee institution. Distribution of royalties and other economic benefits shall be in accordance with the provision of this policy, with shares distributed to sponsoring agencies in proportion to their initial contribution. Should an exception be taken to this provision, the grantee institution, the Society, and other sponsoring agencies will confer to arrive at a mutually satisfactory disposition of invention rights.

http://www.nationalmssociety.org/Research-Policies.asp

Seems to imply they are open to taking royalties, but don't insist on it. I'm guessing this has been blessed by their lawyers.

FWIW

_________________
Art Mellor Dx 2000
You can see what we have to offer at
http://www.acceleratedcure.org/offerings/

Okey dokey, Art.

Uh......... I also notice that what you posted there refers to "joint support" and "grantee institutions" (not "for-profit domestic or foreign corporations" - those are not "grantee institutions" or even just "institutions" alone), and I also see the words "organization" and "agencies" in there, too.

Gee..............as a matter of fact, I don't see the words "business" or "corporation" in there at all!

BUT..........you're absolutely right!

Deb