This Is MS Multiple Sclerosis Community: Knowledge & Support

Dear all,

The UK MS Society website has an interview with Professor George Ebers of Oxford University. In terms of what the future might hold he said that:

'At present we can prevent relapses, in the future we will be able to prevent disability and I think it very likely that there will be a plausible prevention strategy in the next 1-2 years'.


No detail on what this prevention strategy might include - I'm not sure if he is referring to preventing people getting ms or preventing disability for those with ms. But at least some hope for the future.

He's over-stating the postion re relapses. As far as I am aware, the best we have is Tysabri with 66% reduction, which at the moment is only available to US sufferers.

Does anyone know why Tysabri is so expensive? I imagine that these drugs requires substantial R&D investment, but the NMSS website claims that the earlier work on this drug was funded by them. Did they have the sense to ensure that they recover a share of the future profits given that they helped fund the development?

I know the healthcare system is different in the US from the UK - the former being an insurance system. How do the US insurers decide what is a reasonable price for a drug? Do they have the power to get together and tell Biogen that they will only pay $15,000 a year rather than $24,000? Who ensures that Biogen is not making excessive profits?

Just interested to know.

Bromley

Just my opinion on why it's so expensive.
It's has a 66% reduction, it's not hard to figure it out. If it was cheaper and found to be better than the CRAB's, that would put those right out the door. You don't thing the big guns are going to allow that to happen. To much money to lose. With Tysabri higher in price, they'll still get people to at least try it. If not successful for some, they will still use one of the CRAB's and if successful, they keep using. WIN, WIN for the the big pham's.
Just my opinion.
ADJ

In America's current version of capitalism, there is no such thing.

Some good books on this topic as applied to the drug industry:

The $800 Million Dollar Pill
The Truth About The Drug Companies
Overdo$ed America

The drug companies typically give their drugs at greatly reduced prices or free to those who can't afford them. But with Tysabri, even getting it free there would still be a substantial amount charged for the infusion. $500 to $1000 or even $1500. Per month. I'll find out my exact amount when I read the first EOB next month. And the needy won't be able to get that written off by Biogen. For this reason, Tysabri is totally different than the CRAB injectibles.

Bromley,

Dr. Ebers used to be my wifes neuro here in London, Canada. He ran the MS Clinic at the University Hospital. Not to downplay his comments on the recent interview, Dr. Ebers has been saying much of the same for a number of years now. What else are these docs going to say in such an interview...they more or less have to offer some kind of hope against this lousy disease.

As for the cost of Tysabri...Biogen is one of the best companies around for marketing and selling their drugs. Their plan for Tysabri has been very slick and successful. How many other drugs do you know have been approved by the FDA after a company has provided one year data from two year trials from 2 of 99 Phase III world-wide trials? They have plotted out their strategy for taking over a huge junk of the MS drug market and I would say that so far, they are right on target.

Harry

As for prevention:

I ran across an interesting article in my reading about polyamines. The authors used DFMO (difluoromethylornithine) to inhibit an important enzyme in polyamine synthesis. The enzyme is ornithine decarboxylase (ODC) which increases in proinflammatory stimulation. They are able to instigate an inflammatory CNS response in mice by injecting lipopolysaccharides (LPS). Among other things, there is neuordegeneration. By treating the mice with DFMO, it reduced the ODC activity and reduced the neurodegeneration from an LPS injection.

Soulet D., Rivest S. (2003) 'Polyamines play a critical role in the control of the innate immune response in the mouse central nervous system' J Cell Biology 162:257-268.

Then, in working on a grant for ovarian cancer, I came across this article:
Love R.R., et al. (1998) 'A randomized, placebo-controlled trial of low-dose difluoromethylornithine in individuals at risk for colorectal cancer' Cancer Epidemiol Biomarker Prev 7:989-992.

So DFMO is already being used in chemoprevention in cancer. Perhaps it would work in MS. DFMO does have some side-effects in some patients: dermal and intestinal lesions, and slight anemia.

I think it would be worthwhile in a clinical trial on MS patients to see if it could slow or reduce the disease.

Wesley

Harry Z,

You said:

"Not to downplay his comments on the recent interview, Dr. Ebers has been saying much of the same for a number of years now. What else are these docs going to say in such an interview...they more or less have to offer some kind of hope against this lousy disease".

I think you are spot on.

The UK MS Society has an interview with a leading ms researcher every month - they ask what contribution they have made and what the future holds. Invariably, all say that the future for ms sufferers is brighter than ever before. There's always something 'big' coming in the 1-2 year timescale - I might start keeping a list of these predictions. Hope is one thing, but false hope is another.

What's even more incredible is that many of them say they have been involved in ms research for 20 or 30 years. What have they really achieved? They still can't answer one simple question about the disease - e.g cause, why more common in women etc. As I've said before, I find it incredible that the NMSS has spent $400m to date on research and all we've got are expensive drugs which have not been proven to stop disability (the real test of an effective drug in the case of ms).

What would happen if some bright spark actually worked out what this disease was really about (and hopefully a simple, cheap, effective treatment) - all those hundreds of researchers would be out of work and the drug companies would be in serious trouble. I've certainly seen the research profession and the drugs companies in a different light since getting this disease.

I like the way that a recent research project identified minocycline as a possible treatment and a small scale trial produced some impressive results. What large trial comes out of this work - a trial of minocycline + copaxone. The efectiveness of copaxone has already been questioned (Cochrane review). Given this, the trial results might be all due to minocycline - but it will not be presented like this.

Hopefully, the good results from Tysabri relating to relapses will show the same in the second year data. This in turn should force the other companies to come up with drugs that match or better Tysabri (hopefully in a tablet form). But I'm still concerned that there's more to this disease than just relapses - drugs companies are picking the bit of the disease which offers the best returns. And, I find it odd that there's a disease for which the cause is not known, but drugs companies are developing drugs to treat it???? If you took your car to a garage as it had broken down and the mechanic said he could not work out what was wrong but suggested an oil change and a new air filter - would you not be be suspicious! The car might run a little better but it might not be addressing the real problem.

Sorry for the rant, but when you go on the websites of the national ms societies you see the same old phrase 'finding the cure etc etc...' But they never do - and some have been around for 50-60 years.

Finally, I'd like a new law which says that it is legal to shoot anyone who uses the phrase 'there's never been a better time to get ms' (I have seen this) or a researcher who's findings end with the phrase 'the results of my work indicate that further research is required in this area'.

Finally finally - I'd like to see the Kurtz (spelling?) scale scrapped. One researcher recently described it as the 'famous Kurtz scale'. Surely it should be infamous. Is it just me, or does 10 seem a more attractive prospect than 6-9?


Bromley (woken up in a bad mood)

Bromley,




If you read Dr. P. O. Behan's (Professor of Clinical Neurology, University of Scotland) Pathogenesis of MS, he comments on this abysmal record of MS research over the decades.

You other comments pretty much reflect my thoughts on MS and research over the years. As well, a lot of companies and organizations are making a lot of money but we still don't even know the cause of the disease!!

Harry

'I'm getting deja vu all over again!' ---Yogi Berra

Seems this conversation has occurred before, probably several times.

The pattern is usually:
Why don't MS researchers know the cause yet?
Which begs the questions-
How would you recognize the cause if you found it?
Is there more than one cause?

Why doesn't some bright person come along and solve this?
Which begs the question-
What would motivate them?
How would they prove that they solved it?
How would they get their solution known so it can help MSers?
Why would the person work on MS versus other diseases?

Why do the drug companies charge so much?
Again it is a matter of motivation and limited resources that could
go to other areas of research. Also, the researchers have lives
and futures of their own they have to provide for.

What can MSers do?
Research the cause(s), research the treatments, figure out how to
improve them. If you need further education to understand the
science, then read, go to college, get the training, join the
researchers in the labs. Seems MSers would be more motivated
to do research on MS than anyone else. If there are some ideas
out there that sound plausible to you, then get behind them and
pester the researchers and the NMSS and others to look into the
ideas further.

I know MS can hamper one's ability to get through something gruelling like a college degree but there are a lot of intelligent, knowledgeable MSers who have learned things on their own. And you sometimes hear of doctors who have MS. Seems they would be motivated to find a cause and cure but they aren't any further along than others. But, for all we know, the causes and cures may be described out there in some obscure journal related to some other diseases, it's just that they haven't been recognized by the MS mainstream and put into trials. Instead of criticizing the MS researchers (some are good, some are a waste of the time-space contiuum), why not join them or at least work to weed out the wasteful ones?

Bio,

You have certainly touched on a lot of valid points.

In the past few years, with the help of the internet, more and more MS patients that have the ability to do so, are becoming more involved in trying to solve the MS mystery. As you are very aware, research is a slow and complicated mechanism, taking a vast amount of time, effort and money. But at least now far more questions are being asked and more initiatives are being taken.

One thing I find interesting in all of this is that the NMSS's policy is not to hire any employees that have MS. I don't know if this has changed recently or what their official explanation on this policy may be. One person speculated that they didn't want employees who had the disease to be spending too much time chasing possible "cure" leads within the organization and not performing their job properly. I don't know but it is an interesting policy.

Harry

Bio,

Sorry for the deja vu aspect of my post. It's a case of frustration.

An ex- Government minister in the UK recently announced that he has had HIV for 17 years and it hasn't affected him because of the treatments now available. Where there's a will (usually political) there's a way - as in the case of HIV.

I'm not sure it's the responsibility of those suffering from a disease to try and put the pieces together. I am contributing through taxation / donations to ms societies - there are professionals out there who should be doing this. I would have thought that Governments should have an interest given that many ms sufferers end up leaving work etc.

I see so many articles on pubmed about ms but I'm not clear if anyone has an overview or is drawing all the findings together.

Bromley

Harry,

If you are right about the NMSS not hiring people with MS, that is very odd on the face of it. I can't imagine a reason for a policy like that and it would seem, in my opinion, to leave them open for some litigation for discrimination. I would really like to know why such a policy would exist. Would that then extend to researchers with MS who are applying for NMSS grants I wonder. Maybe I'll send them an email to find out.

Wesley

Harry,

I just sent an email to NMSS through their 'contact us' web page with a simple question of do they have any employees with MS and do they have a policy against hiring people with MS. I would like to hear what they have to say but the site says it could take up to 10 business days to respond. I'll let you guys know what they say, if they answer.

I sent in my hypothesis article last week to their research department after OddDuck's prodding. I haven't heard back yet. I'll wait another week before I follow up to see if there are any comments on it yet.

Bromley,

Sorry, I didn't mean to be curt with the deja vu crack. Just thought maybe I could mention some of the areas we touched on before and perhaps fish for some new ideas on them from people reading this thread.

I certainly understand the frustration of MSers with the research. I'm coming from the other side somewhat in asking how does a new researcher with new ideas get into the main stream. My personal solution has been to get into cancer research and work on some aspects common to cancer and autoimmune diseases. It works out better for me in funding and in getting attention to my ideas.

I have been back and forth on whether current MS research is on track. I see a few articles that seem to be on track (the one I mentioned in the previous post above, and the Barnett & Prineas paper in 2004 regarding lesions preceding inflammation). But most other articles still are about the immune system side, which I think gets too much of the attention. I am waiting to hear back from the NMSS on my two inquiries before I start forming an impression of their value.

Wesley

Bio,



That hiring info by the NMSS was posted a couple of years ago on one of the MS Forums and it caught most readers by surprise. It will interesting to hear what kind of response you get back from them to see if the policy has changed.

Harry

Bromley,

I think you hit the nail on the head!

'I'm not clear if anyone has an overview or is drawing all the findings together.' - Bromley

That has been my feeling for a long time.