This Is MS Multiple Sclerosis Community: Knowledge & Support

Dear all,

An MS conference is taking place in Europe this week. The website address which provides details is given below (I had trouble pasting the shortcut). There are lots of presentations on research and updates on trials. Two members of the Boston Cure Project are attending and I would imagine that they will update their website with any important news from the conference.

http://www.akm.ch/ectrims2004/


The UK MS Society is holding a conference the weekend after next which will discuss current trials and possible future treatments. They will no doubt post the presentations on their website.

In mid-November the Australian MS Society is holding a conference to discuss current research in the MS field.

Lets hope that some 'good news' comes out of these events.


All the best


Bromley

I hope something good comes out of these conferences.
Not to be a killjoy, but when you click on the link did you happen to notice the sponsors. The CRAB four. Don't bet there will any talk of the potential of AIMSPRO at the conference. Maybe some doctors will have open minds.

Yes, I had noticed that it's the same companies who seem to sponsor these events. Most of the trials seem to be combinations of their CRAB drugs.

One has to ask what incentives there are for these companies to develop different approaches to MS treatment given that they have a pretty good income from the current immuno-suppressant drugs.

What we are really after is a treatment that stops any further progression (which would allow me to sleep peacefully at night) and then further treatment to repair the damage done. When you look at the research presentations being given, I still get the feeling that lots of researchers are getting PHDs / scientific awards etc, but we still don't seem to be any nearer to identifying a cuase/s or cure.


Bromley

Bromley,

Unfortunately I read the other day that the newest "fad" for the CRAB four is to combine these drugs with one another!!! That's what one possibility of Antegren is....combining it with Avonex...of course Biogen makes both!!

Like you stated, with all the money that these guys are raking in, why would you want to look elsewhere?!! I bet the "combo" treatment will be a hot topic at these conferences.

Harry

Hey, folks!

Harry (and all)..........I agree. I've perused some of the conferences being held here in the States (sponsored by the pharmas), and just the title of the presentations alone tell you a lot!

Get this: "The Myth of Mild MS". Ok, maybe yes, maybe no. But if they make you BELIEVE there is no such thing as mild MS and that you are going to get worse REALLY quick unless you start injectables...........well, need I say more?

Here's another one I couldn't help but laugh at. "The Diagnosis of and Alternative Treatments for MS". Yea, right.....alternative treatments? What do you lay odds that they mean like Harry just mentioned. Combining more than one injectable at a time. Uh........where's all this money going again? Whose pocket?

I'm sorry, I may sound a little sarcastic and down on pharma companies, but I worked for a while on the inside of a medical corp., and needless to say, I didn't like what I saw, and I literally pounded on the conference table a few times, and said "But what about the PATIENT?" I ended up having to get out of that world.

I just am concerned about what is being pushed on people, especially for MS, simply for "market share profits". If you research and analyze these companies carefully, you can find which drugs they depend on the most, and MS drugs are right up there! And you watch. I noticed not long ago, that the injectable drugs are beginning to lose profits lately. (Note that the Mayo has even said to hold off on prescribing injectables right away.) So let's watch a REAL big push now from the pharma companies. OR new treatments (that frankly I might be just a tad cautious about before I jumped on the bandwagon, i.e. Antegren) coming out on the market VERY quickly! I said a few months ago to somebody that the pharma companies would have to do something really fast, because their profits are going down now on the MS drugs. Right about that time, lo and behold, Antegren is released EARLY!

Yea......call me skeptical...........

Deb

Oh, and by the way................just how and why was I myself mis-diagnosed and pushed to enter into an MS injectable clinical trial? And ARE there others like me? Hey, that's an innocent and valid question. Scary, though, huh? My gut feelings kicked in and I withdrew from the trial. Thank goodness I did!

Ok....maybe you can call me REAL skeptical. HAH!

Deb

Hi, I'm writing from Austria where I intended to attend ECTRIMS, but have been struck down by a wicked bad (as we say in Boston) cold that has me stuck in my hotel room. Hollie will be taking notes and will report on the conference over at MSNews.bostoncure.org when we get back.

I want to reply to Harry's comment on the combinations based on my discussions with some of the Pharma research folks. Here's my perspective on it:

1. CRAB combos are being tried (esp. Cop+Avonex) and being funded by the NIH to the tune of $30M! Isn't there somewhere better to spend that money? Teva and Biogen are not in favor of this trial since by the time it is done (5+ years) it probably won't matter if the combo is a few percent better than either one alone (the likely result). Why is it being funded then? I don't know - I'm guessing political pressure from screaming patients asking if they work better together. Big funding from NIH is almost always done through political pressure. Biogen and Teva really don't want to do this.

Prior comments are dead on that neuroprotection is where they should be looking. And I know that all of them are looking very hard in that area. There's a lot of money to be had coming out with the first drug that does better than 30% - you'll get most of the pie.

2. That brings us to Antegren. Combos with Antegren and Avonex (and eventually all the others) will need to be done if Antegren is shown to be effective for ethical reasons. You can't ask someone who is responding to Avonex to stop and go on Antegren. Well, you can ask, but that would be considered highly unethical. Thus Biogen must find out if Antegren + Avonex is safe and more (or less!) effective. And each of the other CRABs will need to do the same. So it isn't entirely out of greed (although a market of people taking a CRAB drug *and* Antegren is the desired outcome for them).

3. As to things like LDN and Aimspro getting discussed at these conferences - well I can tell you none of the CRAB companies has heard of either from my asking around so their sponsorship isn't going to effect them that way. They won't be able to discuss them at these conferences until hard data is available (unless someone wants to do a case-study - which won't carry much weight) which is as it shold be. Daval has a study going and if it turns out to be promising, it will get announced at a conference like this. Same with LDN should one of the studies in the making actually happen.

4. In defense of the conference organizers - they really do bend over backwards to make sure the content isn't influenced by the sponsors. The influence that you will see does not come from which things get to be presented, but rather from which studies the conference has to pick from. Since the Pharma companies probably fund as much, if not more, research than the MS Societies and NIH, the bulk of studies are going to be slanted towards one of the drugs.

I'm not saying any of this in defense of the system being good or right. I think it is totally broken, but I believe the problems all stem from the reward structure we have in place - meager chunks of funding being doled out by a few agencies and companies.

Just imagine if something like the X Prize existed for medical research goals? What if the team who could determine the cause of disease X was given $20M for doing so? I think that would really change things.

Don't know if anyone saw last night's tv episode of Law & Order...the story was about a greedy pharmaceutical company who deliberately kept negative trial data on their anti-depressant drug from the public. The added spin was doing this in order to protect its patent that was going to run out on the drug within the next year or so. The note at the beginning of the program stated that events shown were fiction and not based on any one incident....which means they got the idea from a true life scenario!

Found it ironic seeing this with all that is going on at the present time!

Harry

I didn't see it, Harry..........but I gotta say....that does ring a bell, doesn't it?

Deb

Ya know, Art. I had to think about and consider everything you were saying. You made some interesting points.

Bottom line (and this was suggested to me by the people I work with here), maybe........just maybe........instead of totally bucking the "system" as it is, a person may HAVE to "buddy up" with the pharmas a little. You scratch my back, I'll scratch yours. As crummy as that sounds. You just have to watch your back and be really "smart" about it, ya know? That's a dog eat dog world, that's for sure.

The first thing that was suggested to me (by Union leaders, by the way) was to engage a pharma company. Well, ok......I included them (the pharma corp.), but I pushed my point (i.e. research/clinical trial - which by the way, is still considered very valid and extremely "interesting") via the other direction first (i.e. altruistic angle).

Remember, my first neuro sort of "discovered" this with me. (Whether I myself have MS or not is irrelevent to the research and conclusions I found and compiled.) And he has since become really "close", shall we say, with the pharmas. (It's no secret. He has his affiliation posted on his website, of all things.)

hmmmmmmmmmmmm.................. (Deb is putting on her strategy hat......LOL)

Deb

I just had to comment on part of Art's post:

"Just imagine if something like the X Prize existed for medical research goals? What if the team who could determine the cause of disease X was given $20M for doing so? I think that would really change things."

That's BRILLIANT!!!

The X Prize was only $10 million, yet Scaled Composites/Paul Allen ended up spending a lot more than that to win the prize. Prizes are an amazingly effective way to encourage all kinds of things - from research and development to getting people to try your brand of soap. Why not for treating diseases?

Art, are you really thinking of trying to do something like this through the Boston Cure Project?

I like the idea of a prize for the scientist/s who discovers the cause / cure for MS. They say there's 2 million suffers - if we all donated £10 each that would be £20 million (just over $30 million).


As an alternative, we could kidnap the top 20 MS scientists and lock them in a hotel (with lab facilities etc) for a year - the one who came up with the cure would get the £20 million.


Bromley

So how would an explanation of the cause be judged? There are alot of hypotheses but which one is right? Perhaps there are several different causes. You might not know if a hypothesis is correct unless it is proven in some way. That could take years. Then who would you reward, the person(s) who first described the hypothesis and/or the person(s) who prove the hypothesis? What if a cause could not be proven easily but the hypothesis leads to more effective therapies? Who would be the judge? Just because someone is a big name in MS research doesn't mean they are the best judge. They might have too much vested in their own research ideas to give a fair appraisal of other ideas. The best ideas may not come from them anyway since they may have been too focused on getting their tenure and prestige to take the risks needed to develop new ideas.
President Kennedy gave us a directive to put a man on the moon within a ten year time frame and we did it because the overall scope of the problem was defined and could be broken down into individual tasks under the control of one focused organization. President Reagan tried to do the same thing for cancer but the scope of that problem was not known at the start (there are at least 147 different types of cancer) and there were already numerous autonomous groups going in different directions.
The Boston Cure Project is a good idea to give perspective to the problem. But there needs to be some criteria for judging a hypothesis as potentially valid or not and there needs to be a means of getting hypotheses into an open forum where the hypotheses can be judged, tested, and refined. So those are my suggestions: 1. develop criteria for judging hypotheses, 2. develop means of openly circulating hypotheses so everyone can read, discuss, critique, and test them.
I think that the so-called autoimmune diseases are so interesting that intellectual curiosity is all that should be needed to motivate someone to develop a hypothesis, not necessarily monetary rewards.
Just my thoughts. Wesley

Wesley,
I agree completely. It's pretty tricky to define exactly what would merit a multi-million dollar prize and it certainly would take years. I don't have any answers myself, but it seems that the real proof of any theory about MS has to be when the application of the theory actually works in people with MS. So maybe there'd have to be a clinical trial of a certain size in order for the prize to be awarded. Just a thought.

I say, let the patients be the Judge.

Give some control and/or give serious consideration to the patient (or provide a method for gathering actual feedback directly from patients) of treatment or therapy options. As it stands now, a patient has to beg, plead, coerce, go from doctor to doctor, to even ATTEMPT trying something (even something fairly safe) that they feel may help them.

What's up with that????

Deb