This Is MS Multiple Sclerosis Community: Knowledge & Support

In case you haven't seen this link that Robbie posted. Everyone should. Its a great read, and very important for people to read. Spread it around.

http://www.newstarget.com/020345.html

I call this the "Enron Mentality". I realized--over 30 years ago--there would never be a cure for cancer. It would financially break the medical community. Think of all the equipment/medications that have been developed to "treat cancer. What would happen to all that unusable "stuff" if a cure were found tomorrow? People found me a bit radical and maybe a little deranged???

Yes, science steals from nature. Just look at statins, which come naturally from oranges!

This is one of the many, many reasons my daughter is currently on a totally natural treatment. May not be a cure--only time will tell--but is fairing a thousand times better than she ever did on Avonex and the multitude of other--serious--medications she was on!

I hate it that I have come to so hate the lack of morality and integrity in big business today. And what can we do???

Thanks for this very informative article although I found nothing surprising in it at all. Just appreciate the verification!

Viper,

I have a slightly different view on this. I don't mind drugs companies making profits - as long as they sell effective drugs. I'm on Rebif which I imagine costs my health service £8k a year. But I'm just going through my worst relapse - so it hasn't reduced the number of relapses compared to pre-Rebif or the effect of the relapse. I would quite happily pay this money every year if the drug stopped the disease in its tracks - made the disease inactive.

In many areas e.g. breast cancer, the drugs are saving lives and no-one would argue with the cost of these drugs. Average life expectancy is increasing every year as are survival rates from many cancers and heart disease etc. I read that 50 cancer drugs will be coming to market in the next five years.

My real issue is with the drugs companies which cover neurology - MS, ALS, dementia etc etc. Drugs in these areas are really having very little effect and do not address the underlying cause of a disease such as MS. But we, and our neuros, have little choice. If we are dx with RR we have the choice of four injectibles (excluding Tysabri). All with very poor efficacy rates. And they cost a stack of money and are very profitable. Most have been around for over ten years which means the companies have recouped their R&D many times over. MS must be a complete cash-cow for the drugs companies - no wonder Biogen are buying up every promising drug.

So I have no problem with profit as long as the goods are what the customer wants - to stop the disease / reverse it.

The most interesting trial in my view is Rituximab for PP MS. Here Biogen cannot get away with the usual reduction of relapses / reduction in Gd enhancing lesions etc etc. Any drug for PP MS is about stopping progression / radically slow it down. If successful this should be of benefit to all of us. And I won't care what Biogen's profits are - as long as they sell drugs which put this disease to bed and allow us to get on with or lives. Stability is what I want from a drug - the knowledge that you won't get any worse. You can build on stability and hopefully in the future we might be able to recoup the deficits.

Ian

Thanks for that eye-opening link. I was very glad to see that the piece mentioned the problem of older out-of-patent drugs being under-researched for their possible other uses. This is why the needed trials for antibiotic protocols ala Wheldon and Vanderbilt and for LDN are not happening---there's just not the same kind of money in it for the big pharmaceuticals as funding research into new long term use drugs or in promoting newly developed drugs.

Speaking of pharmas "promoting" their drugs, here's another eye-opener: http://observer.guardian.co.uk/uk_news/story/0,6903,1101680,00.html

Cypriane-caregiver and advocate for husband with SPMS

Totally agree Ian. I have absolutely no problem with pharma companies profiting when they develop new and better, more effective treatments. As far as I'm concerned whichever company comes up with a treatment to stop progression or to promote neuro-repair deserves it. That's what gives them incentive to help us even when compassion doesn't.

Both articles are interesting but very disturbing. Will they ever come up with a cure....?

Say we didn't have MS but were on the Board of a major company. What would be our primary objective? To make money of course.

Now if this were a pharmaceutical company, and every drug we produced cured disease, how much money would we make compared to drugs we produced to "manage" disease??

We would be stupid to go the cure route, surely? Surely we need these sick people to stay sick and keep buying these nice expensive ineffective drugs to MANAGE their disease and keep us in profit.



Chris you are right. Our only hope is with the research that is done through funded organisations/hospitals and not drugs companies.

J.

I don't think the broader question for this thread is whether or not the pharmaceutical companies are entitled to a worthwhile profit, but rather, it is whether or not the consumers are aware of how the big pharmas influence the overall scene of research, medical knowledge, what constitutes mainstream treatments, and ultimately, the consumers' health. Of course, this also calls into question the usefulness and trustworthiness of the entire system of research > trials > treatments. I have much more trust in this system: doctors prescribe safe drugs for off-label purposes or safe alternative therapies because they are effective for those purposes > patients improve with minimal or no side effects > researchers figure out why these non-mainstream treatments are working while patients are already enjoying the benefits.

Cypriane~caregiver and advocate for husband with SPMS

If patients would stop taking the drugs which are not showing a REAL benefit to their conditiion, drug companies would take notice.

The imagined benefits, which are contrived by the pharmacieuticals, need to be challenged. This is not possible as long as patients continue the meds out of fear which has been carefully plotted by the companies.

I know that I will not take any med that does not show an immediate advantage to me, such as making my weak legs work again. Imagining that I am getting better is not an option for me.

All a person has to do is take the time to read about some of the hundreds of trials and research going on now which is geared towards finding a cure for MS. There is no way that the pharmas are sitting around hoping others are not successful, because the first one with the cure or positive treatment wins the money and the prestige.

I believe that there is a lot of research going on now that is going to help us and that there is not a general conspiracy to keep us forever drugged and feeble.

gwa

i'm on board with that geedub! mind u i never gave any drug a chance to help me lol... i have been down on the system for over a decade now, long before this rather hasty diagnosis.

pfizer: putting the "harm" in "pharmaceuticals" has been my motto for years! i had some serious problems trying to wrap my head around the rebif prescription and finally said NO THANKS

not that they don't do all kinds of good for all kinds of people of course, i'm just a tad bitter personally lol...

EVERYTHING IS A CONSPIRACY!

It is the way of the world, the US, the economy. It's naive to pretend that everyone isn't out to improve their life somehow. We are motivated to make our lives better. That's human nature.

Given this.

You can buy stock in the Pharma Industry. I own Pfizer, Biogen and Opexa. I'm not getting rich doing this. So you say, it's the management that's raping the ill. They have jobs. They might be making a million a year, but that's their job. They spent years in expensive colleges to get those jobs and made other personal sacrafices to get them. My job doesn't pay that much, but I'm not the lowest paid person at my office either. So if the cost of the drugs isn't unreasonably going to the shareholders or the employees, where does it go?

Maybe some of it is spent on the research we so desparately want. Maybe it get's spent on the administration that the companies need to hire thousands of people to perform so that they are in compliance with the thousands of federal laws that can ding them at any time. I'm not looking to defend the Pharma industry, but I'm saying the economics of corporate America is such that the big conspiracy is that it costs a lot of investment like medical school and liability insurance to make a hundred dollars an hour.

Nothing worth while is free.
napay

_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

It was said:

And LOTS goes to advertising!

maybe some on quasi-research that we could do without?

oo

A little off topic, but an interesting book which delves into this subject is Confessions Of An Economic Hitman by John Perkins. He gave a talk on NPR not too long ago. The following is from inside the dust jacket.

NHE

ugh has everyone seen or read "corporation" here? another fun one. basically its point is that it is up to us to find a way through the corporate agenda, so i guess in the case of ms that would ideally be without supporting the crap half measures. i think in my case it's a little easier to buck the system because i don't really agree with the diagnosis - in fact i will restate here that i think the diagnostic tools are pretty useless and vague - and think my problem is primarily nutrition related. but i'm on the boycott the bad guys bandwagon for sure.

okay and furthermore, why the HELL, when there is so much research showing the highly significant differences in nutritional status of ms patients, aren't micronutrient status testing and supplementation part of the treatment you receive through your local ms clinic? it's INSANE. "just eat a balanced diet, you'll be fine, oh and take this massively expensive shot every couple of days to replace the function of an immune system that is out of whack because it doesn't have the chemical tools it needs to work with in your blood, but we haven't got any idea how to remedy that lack, no no." it should be illegal. malpractice maybe. well i have to go i'm supposedly writing an essay at the moment!