T cell research

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby HarryZ » Sun Dec 31, 2006 10:53 pm

Chris,

Chris55 wrote:Okay Harry Z...you have put all of my thoughts and opinions into your posts!


Your message says most of what I believe....only in spades :)

The longer one has followed MS research, the more skeptical one becomes. I've been doing this for over 40 years now, ever since my uncle had the disease in the 60's and I was a teenager. I can't count the number of "cures just around the corner", "we are almost there" and "there is light at the end of the tunnel" comments I have heard during this time.

Almost the entire focus on MS research has been on the auto-immune theory all of this time. It doesn't take a rocket scientist to see the abysmal lack of success in this area. What did one writer say..."Tysabri has been the best drug to come along in 10 years for MS patients" Good grief, if that's the best result in 10 years, is it no wonder we haven't even a cause for the disease as yet?

I'm afraid that there hasn't been anything to alter my skepticism with this disease and I don't see anything out there that shows a lot of promise in the immediate future. But as one neuro told me.....at some point in time, some researcher is going to stumble upon the answer, pretty much by accident. I sure hope that "accident" happens soon because my wife is running out of time after 35 years of fighting this lousy disease.

Harry
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Postby Chris55 » Tue Jan 02, 2007 7:00 am

Harry Z--since there are always 2 sides to every story, I have to be fair to the other side.

For too many years, MS fell into the orphan disease category. Now that we have reached 400,000--properly diagnosed or not--drug companies are willing to expend the money for MS research.

If the doctors/patients don't support this research by prescribing/purchasing the products available, the research will stop. It is really a Catch 22.

MS is no different than cancer. We were hearing 40 years ago the cure for cancer was right around the corner. There were even "underground" rumors that 2 scientists had actually found a cure but were barred from pursuing it.

Can we all imagine what would happen to the medical industry financially if a cure for cancer were found today? It would bankrupt them!

So we will just keep on keeping on!
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Postby HarryZ » Tue Jan 02, 2007 7:20 am

Chris,

For too many years, MS fell into the orphan disease category. Now that we have reached 400,000--properly diagnosed or not--drug companies are willing to expend the money for MS research.


I believe that one of the reasons MS was kept in the orphan disease category (numbers never changed for years!) was to ensure that the drug companies continued to pump money into their research. But what kind of research was being done? Pretty much all of it focused on bringing drugs to market that played with the immune system....long term use drugs that brought in a lot of revenue but didn't do much for the patient's MS.

The real research, at the grass roots level, is being done by the universities and medical centers but even today, this is small, under funded and fragmented.

Yes, we need big pharma to remain in the picture because they have the resources to carry on the research at the levels needed in this area. But at the same time, they are focused on profit and not necessarily in spending huge sums of money in finding a cure or heading off in different directions to do this. Even though these companies have enjoyed orphan drug status protection and made millions and millions of dollars with their drugs, the cost of these drugs has continued to go up!

As you stated, this is indeed a Catch 22 situation and I haven't seen much change to this in years. MS still isn't considered a serious enough disease like AIDS or cancer and its funding from the public and government is far below these diseases. So in a Catch 22 situation MS remains with very little progress in finding the cause and then a cure.

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Postby Chris55 » Tue Jan 02, 2007 9:05 am

Going further, Harry...drug companies that seem to have some really encouraging new drugs (Tovaxin) can't get funding from the NIH. What's with that??

At one point not long ago, Tovaxin announced that they would be conducting their next trial as a companion trial with Avonex. I thought I was going to throw up! (I had been following this drug for quite some time and had sent my daughter's name in to participate.) Subsequently, I read where the drug was sold and the new owners were desperately trying to raise enough money for the next phase from private donors. Nothing even mentioned about Avonex! Why can't this company gets billions of dollars from the NIH like all the CRAB companies?

Again, rhetorical question with the answer "policics" as always. (And probably a few kick-backs. What is so discouraging about kick-backs is how little it takes for someone to sell their integrity these days!)
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Postby ewizabeth » Tue Jan 02, 2007 12:11 pm

Chris55 wrote:...drug companies that seem to have some really encouraging new drugs (Tovaxin) can't get funding from the NIH. What's with that??

....Why can't this company gets billions of dollars from the NIH like all the CRAB companies?



Chris,

Maybe because it is still new and different? I would like to hope that it isn't being avoided to appease the major ABCRT drug companies? Maybe if and when it makes it into phase III clinical trials, it will have more support.

Did the other ABCRT drugs have support from the NIH before they had FDA approval? :?:
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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Postby HarryZ » Tue Jan 02, 2007 6:20 pm

Chris,

Again, rhetorical question with the answer "policics" as always. (And probably a few kick-backs. What is so discouraging about kick-backs is how little it takes for someone to sell their integrity these days!)


You've got that right!! Money rules the big pharma research world...always has and always will. Wave a few dollars in front of some docs and they will say anything you want to make your product front and center.

I'll never forget a MS research update on Betaseron that I attended about 6 years ago. I asked the neruo after the presentation what he thought about Prokarin which was just emerging at the time. Well, his comments weren't exactly kind!

After the presentation was over and the people were mingling around, the Burlex rep (makers of Betaseron) approached me and started a conversation. She was very pleasant and the talk got around to Prokarin. I asked her why these docs wouldn't even consider testing Prokarin on their patients and her response..."because no money would cross their hands"!! No more had to be said.

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Postby Chris55 » Tue Jan 02, 2007 7:18 pm

What pisses me off about the NIH research "donations", Harry...Biogen has paired with a company that is NOT even in America! They are actually doing all of the research. And my tax dollars go there?

My daughter's MS neuro--a highly regarded "specialist"--will ONLY prescribe Biogen products. If you want another CRAB drug, you have to give his office notice so he can order it. He absolutely REFUSES to prescribe Copaxone. If a patient wants that drug, they are required to find another neuro. Everytime my daughter walks into his office, he says "Tysabri". And she says, "NOT!" I JUST learned that his practice is one of the test sites for Tysabri--geez, no wonder! Now this is what really makes me ANGRY--my daughter's MS is unbelieveably mild---less than .1 on the EDSS score--almsot doesn't even score. And he is trying to push a controversial, potentially DEADLY, brand new out-of-the-gate drug on her? No morals, just no morals! That's MY child, damnit!

Now, we all know I am the Resident Cynic on the site. But...and I didn't know this until recently...the company that produces Copaxone is from Israel. Hummmmmm....do you suppose there is something to this????

I know, I know...I just don't trust any of them, damnit! Cheers all!
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Postby HarryZ » Tue Jan 02, 2007 9:34 pm

Chris,

The story you told about your daughter's neuro is only the tip of the iceberg when it comes to how companies like Biogen have their claws into these docs!! Pretty disgusting, isn't it?!! And some readers wonder why I dislike that company so much.

Now, we all know I am the Resident Cynic on the site. But...and I didn't know this until recently...the company that produces Copaxone is from Israel. Hummmmmm....do you suppose there is something to this????


Hey, wait a minute...I thought that I was the top resident cynic on this forum :D I'm older than you are (57) so I win by seniority :)

Teva, the Israeli company that makes Copaxone, is in a real dogfight with Biogen and Avonex over market share. These two really go at it because every percentage point you gain or lose means $millions in profit or loss.

Take care.

Harry
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Postby Chris55 » Wed Jan 03, 2007 6:16 am

Uhhhhh Harry....I'm 58!! (Just had a birthday). Carry on! Chris
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Postby HarryZ » Wed Jan 03, 2007 6:56 am

Chris,

Chris55 wrote:Uhhhhh Harry....I'm 58!! (Just had a birthday). Carry on! Chris


Arrghhh...I've been displaced and relegated to number two on the cynic list on this forum :D

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Postby Chris55 » Wed Jan 03, 2007 8:34 am

Harry--Humility is doled out to all of us on a daily basis! Suck it up, you youngster! I am now "Mother Superior"!
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Postby JFH » Wed Jan 03, 2007 11:10 am

Just a comment on what Statler and Waldorf :) have been discussing here.

Chris55 wrote:Can we all imagine what would happen to the medical industry financially if a cure for cancer were found today? It would bankrupt them!

Recently here in the UK there has been a push (who by?) to vacinate preteen girls against cervical cancer. Ok not a cure but a long way to eradicating that disease. Is this bankrupting the pharma co's? No, it is a another opportunity for them!

S&W click here http://catarinia.no.sapo.pt/Universo%20Catariniano/statler&waldorf.jpg
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Postby Chris55 » Wed Jan 03, 2007 1:26 pm

And we won't know for years, John, what damage this vaccine might do in the long run.

Now.. if they found a vaccine against "cancer"--all cancer--that would be a horse of a different color!
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Postby CureOrBust » Wed Jan 03, 2007 7:47 pm

JFH wrote:Recently here in the UK there has been a push (who by?) to vacinate preteen girls against cervical cancer. Ok not a cure but a long way to eradicating that disease. Is this bankrupting the pharma co's? No, it is a another opportunity for them!

And the beauty of this is that you get to vaccinate EVERY girl, as opposed to only 1 in x getting cervical cancer...
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Postby Loriyas » Thu Jan 04, 2007 9:45 am

I agree with Chris55 regarding side effects. I have a 13 year old daughter and I am holding off getting the vaccine for her until I see what side effects crop up. It's too early to tell, and I'm not going to have my daughter be the guinea pig.
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