This Is MS Multiple Sclerosis Community: Knowledge & Support

I read postings on this forum on a regular basis and quite often it amases me. We all have an awful disease and it is a rough ride. But i think we are very quick to judge..

common themes include

Anti - CRABS (well I'm on copaxone and doing great - I know its not for everyone, but I cant be the only one who is doing well on it? OK so its not a cure but its the best available to me at present)

Pro-antibiotics - all well and good if you (the non-medical educated) can convince your GP to give it a shot. Mine wont even prescribe baclofen.

Anti-pharma companies......

Now this is where I really start to rant!! I dont mean to offend anyone, so if I do there are apologies up front.

Crabs, provigil, baclofen, amantadine, tysabri, antibiotics, and a number of up and coming drugs in phase II and III trial... to name but a few...

Who developed and make these - the government? I think not.. It was the pharma companies.

One of the things I see on this 'unbiased' site is that we all hate the pharma companies because they monopolise the medical industry. (Ok so part of that is true) But to those who speak out against them - I am presuming you dont take any of the drugs these companies develop? Surely them working in their world dominating fashion is better than them not working at all?

It really does grate on me when there is discussion on how much we hate crabs and the pharma companies etc.. when I dont think that is the case

what we actually hate is having MS... It sucks! And by directing our anger elsewhere this site has acheived biases, which are hard to shake off.


Anything that works is fine by me... and again apologioes for ranting...

Im just trying to keep the site unbiased in my small way

R

R, you are totally on target. I haven't started Rebif yet but I am darn glad that it exists for me to take and that all of the other treatment options exist too. They are not a cure and they cause side effects but at least they are a step forward and they carry some hope of controlling this disease. We think of the pharmaceutical companies as money-hungry, heartless monsters but their job is to make money by making new medications. And if they can make lots of money by curing this disease or finding better, more effective treatments, I say more power to them. The fact that there is money to be made in this disease is why there is so much promising research going on. I am not concerned with the politics involved, I just want the best treatment possible. I know this is not a very pc view but this is not a very pc disease. This disease does make us attack everything associated with it-even those things that are supposed to help us. But if these "evil" pharmaceutical companies can cure this with whatever kind of treatment they come up with, I will love them forever.

It is an unfortunate but true reality that the reason there is so much research activity in multiple sclerosis is because there is a large monetary opportunity to any company that comes up with a treatment. Biotech companies do not exist in order to spread goodwill and there are many devastating illnesses that receive scant attention because the business opportunity to treat them does not justify the expenditure and risk in developing a therapy candidate. Reality.

As for the questions regarding bias: This site *is* unbiased in that we are not the official or unofficial mouthpiece for any organization, corporation, viewpoint, etc. We *do* single-mindedly represent a desire to end MS and improve the lives of MSers through knowledge, and are fully cognizant of the fact that cure(s)/treatment(s) can come from *any* part of the MS world-- pharmaceutical, nutraceutical, diet, biological, etc. With that in mind, we try and cover as wide a swath as possible with our front page stories because there is a lot of ground to cover (thankfully!).

The attitudes in the message boards are diverse and with over 2500 registered members, there should be plenty of adherents to any given thought such that everyone can hopefully feel that they are among friends. If that's not the case, then let me know.

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Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.

Actually, I think it is quite fortunate that there is money in this for the pharmaceutical that comes up with anything close to a cure.

I agree with rasnet6. Ranting about big pharma is a disservice to MS research. Pharma companies are MSers best hope and thus, best friend. No one else is going to do it. And no one else would have done it in the past. The only reason we have CRABs as bad as they are and as GOOD as they are is because there was money in it. And many people are grateful at least that exists.

Very many are working on MS drugs. It all takes time and costs money. It costs a lot of money. More than 95% of “promising” compounds never make it to human trials. Human trials are very expensive and most end up in failure. It is like a big lottery for the companies. They hire the best minds, pay them, provide expensive state of the art facilities and support. And in the end, they very rarely end up with a product. If they do, this product has to support research in many other fields to keep the process going. My wife worked as a researcher in cancer and diabetes for two pharmaceuticals before MS. She would definitely never say that pharmas are not doing their job.

Most pharmaceuticals, and all big pharmaceuticals, have a human face. They do care. Nonetheless, they are all for profit companies and their responsibility is (1) to their shareholders and (2) to be able to stay afloat in order to bring more good in the long run. They cannot provide more heart and philanthropy to the process than they can afford.

All who are looking for big pharma to do studies on efficacy of free, cheap, or similar treatments are asking for the ridiculous. That’s like asking a taxi driver to donate 40% of his pay to fund a new bus stop that people may or may not use in the future. He’ll tell you that he is working hard to bring money to his family taking risks on a daily basis and if you want a new bus stop, fund it yourself. And if you force him, in the end, you will likely find yourself without a bus stop or a taxi driver. I.e., complain about the government not doing enough, ask your friends who contribute money to all sorts of worthy efforts to funnel it toward MS, join an MS study that you believe in, but don’t ask for profit organizations for charity work. They will go bankrupt, and in the long run that is the last thing you would want. Without them, no one would do anything to help.

I think this a double edge sword.

Drugs companies produce MS drugs that some of us take. Trials suggest that the licenced therapies, the CRABs and Novantrone, have some effect (for some) at slowing down the damage caused by this disease. This is a $4-5 billion a year buiness for the drugs companies, so lots of companies have therapies that they are working on - Dignan's list shows this.

Competition for the MS $ is intense which should lead to improved therapies. One would hope that, if Tysabri retuns to the market, and shows superiority over the CRABs, then this should lead to increased pressure for other drugs companies to improve their products / come up with more effective therapies.

But there are several issues which are of concern.

(i) Drugs are expensive to develop, so if Tysabri proves a success, and the makers of the other injectibles see a sharp reduction in revenue they may decide to move out of this sector.

(ii) There is also a question of market dominance. Biogen own Avonex and Tysabri. They have two very promising therapies in trial - Daclizumab and Rituxin. What if these two therapies prove much better than Avonex or Tysabri, but are not as profitable to Biogen? Biogen may drop them which would not be in the interests of MS patients.

(iii) The domination can also effect new entrants into the market. I was asked to join a trial of a drug, but the trial had to be abandoned because the required number of triallists could not be recruited. Yet it staggers me that head to head trials between the various CRABs are still on-going when their efficacy is known. There is now a trial of one of the interferons plus copaxone. I have always been suspicious that the CRABs all offer the same level of efficacy - c.30% reduction in relapses.

(iv) The domination issue can also be seen when cheap drugs show promise. Minocycline in a small trial showed that it might offer similar levels of effectiveness to the CRABs. But the trial that went ahead was Copaxone with minocyline.

So I agree that the drugs companies have invested in therapies for this disease and there are drugs on the market and in the future there will be more. But we are also being offered the drugs which the companies want us to take (profitable / long-term treatments) not the drugs that we want (to halt / reverse the disease). One of the neuros I see is responsible for overseeing trials of therapies created by the drugs companies, but told me that they also trial drugs which the drugs companies don't want to touch but which may be very effective.

I think we all understand that the drugs companies are commercial companies looking for long term profit. I would be more than happy to pay $XXX,XXX for a treatment that halted / reversed this curse and gave the companies a healthy profit. But at the moment I, like many on this site, are providing the drugs companies with a healthy profit but not getting what we want. That's why some, like me, raise issues about the drugs companies. I love them and hate them in equal measure.

Ian

Ian,

I agree with everything you are saying. However, in certain ways it is a question of perspectives.

It would be nice if there was some organizational body that would decide, "this is a good candidate and will put it into a trial and pay for it." Then, minocycline would get its fair shot. And, I definitely believe it should. Furthermore, in US, Canada, Britain, Russia, etc. organizations of this type, typically government sponsored, exist. One may argue that they are underfunded or wasteful or inefficient in where they throw money. But, it is thir responsibility to fund a minocycline study.

I commend the drug company in stepping in and saying, "hey this looks promising, let's try it in combination with our medicine." They didn't even had to do that. One can argue that if the treatment looks good as a combination, many neuros will write minocycline prescriptions to their single episode patients, uninsured patients and the like. If the combination is deemed more effective than Copaxone alone, it will become a trial and a treatment spontaneously. I.e., look at all the people poping antibiotics without a thread of evidence. A drug company is definitely risking its dominant position with a trial like that. (I believe Copaxone is the most "effective", approved, unrestricted treatment out there today.) Minocycline is potentially Copaxone's worst nightmare.

As far as market dominance, moving out of sector, etc. arguments, I agree, it is capitalism. If there will be a treatment that is similar in effectiveness as something that just made it to market, then it may not be economically viable to pursue further development.

Nonetheless, it is a race, and even if a company has a better treatment that may not produce as much profit as something it came to market to already, it will not drop it. It has already poured a lot of money into the treatment, competitors will soon be out with better stuff, the worst it will do is slow it down a bit. But, most of the time, slowing it down is a bad move. In a race, one wants its best stuff to be the best as long as possible.

But, in any case, my point is that drug companies are not evil as many posts imply. I find it interesting catching myself arguing the beauty of capitalism and laissez-faire when I have grown up as a liberal with socialist tendencies trough my academic career.

So, to get back to my socialist side, the drug companies are picking up the slack here. I think it is in societies good to get rid of this disease. So, it is the government that should be the leader in MS research, not the private industry.

But, as long as it is the private industry doing it, we should not be bashing it.

Sorry gkalman, but I think more criticism not less is needed with regard to big and bio pharma. Consumers and doctors are asleep at the wheel. Case in point- the good ole' Avonex/Tysabri parfait. If this doesn't smack of Biogen/Elan protecting its Avonex revenue stream, I don't know what does! Consumers should have been outraged. Biogen knew long before the launch that there was no greater efficacy with the combo, yet they allowed--no- encouraged duel use.

Profit motive can send the train going the wrong way on the track as I believe has happened with the autoimmune theory of MS. So much time and money has already been invested in this theory that pharma must perpetuate and pursue it.

Let's face it, this is why there are only modestly effective drugs for MS. Should they even be selling drugs that people pump into themselves where the label states that the, "mode of action is not known?"

gkalman-I am not picking on you--these are just my thoughts on this bigger issue
Lexy

rasnet6,
You nailed it on the head in regards to the forums. This is probably why I've gone from visiting a few times a week to once a month. There seems to be an attitude of "I know more than you do" by some posters. Some talk as if they've already figured out the disease and they don't trust conflicting opinions. For the most part, I do like this web site and the general purpose of the forums. I'll be back in a month.

Thanks people you have restored my faith in the world...

We have 2 sides to the argument now which seems much fairier

apologies for calling the site biased - as I know its not... but sometimes i do feel like certain topics are pushed down our throats - anti this ....anti that.....

credit where credit is due.. thats my motto and I wouldnt be without my copaxone!!

sojourner, disagreeing is not picking on someone. It is nice when someone constructively disagrees. I loved rasnet6 little rant about certain parts of this forum, so I wanted to support him.

Reading the Antibiotic forums, one gets the opinion that many there know everything about the disease and how to cure it. As someone with mostly a pragmatist personality, I start getting a bit irritated after reading enough of it. Unfortunately, there is no proof, it is just a collection of friendly, but often conflicting opinions. I do hope one of them is right, but I find it hard to read that forum anymore because I don't know who to root for.

Noone knows much about this disease. I wish I knew enough to say if it is autoimmune or not. I do not. I do think however that if a pharma believed it was not autoimune, they would pursue it in one way or another. There is definitey money in it.

As far as Avonex goes, there were about 1000 people in the combo trial. I think there were 5000 total in all the Tysabri studies. (Could be wrong, going on memory here). It would have been easy enough to compare the efficacy of Tysabri alone vs'. Tysabri+Avonex because the trials were similar enough.

I like this site a lot. The reason I like this forum more than others on this site is because people here generally are realists, looking for scientific proof, and are fairly pragmatic about it. I am very grateful to all that contribute.

gkalman,

I agree, this site is wonderful because of eveything you stated---I am thankful everyday for it!!! From the bottom of my heart.

It is sometimes difficult to explain one's feelings in writing. I truly do not believe that the abx folks are trying to ram their regimen down anyones throats, but when one observes reactions and improvements that are profound in this really terrible disease, it makes one almost compelled to share it. Ian's correct, it is very unscientific, but it is how people feel. I make no apologies for this.

I will only post about abx in the "appropriate" areas of this forum as to not offend, but for those seekers out there, I will do my darndest to keep excellent records of my husband's experience to share ( and by the way, that is exhausting to do). Lastly, I do not claim to know the cause of MS--I have ideas and beliefs, but no absolutes. That seems to be in line with the rest of the world.

I have committed enough thread drift for one day
Lexy

Hello to you all,

By reading this post, I have realised that many people feel bitter and others feal happy of what currently exists to fight MS. For the young (like myself 27 years old) the near future holds much promise (Neurovax, Tovaxin etc.). Its the old people that are paying the price of the companies and goverment policy (dont forget that goverments today are more like companies than goverments) to work more for QUANTITY then QUALITY in terms of money the first and meds the second.

In one month the goverment managed to reproduce the chicken virus (H5V something) and in two months to reproduce an effective vaccine for it. Dont you think in 20 years they couldnt produce a med with more then 30% efficiency. We are not stupid and they know that, hence better meds will eventually come out!

It all about money folks and the old will pay the price unfortunately!

You are right about that. I am also relatively young (31) and I have a lot of hope for the future. Maybe the reason that older people with MS or even those that have had it for a longer time feel bitter and distrustful is that they have lived without hope for so long. There used to be nothing that could be done and nothing that they could give you when you were diagnosed. They'd send you out the door with nothing more than fear of a future that was unknown. It must be hard after all these years of virtually no progress until the last 10 years to suddenly believe that there is hope of a cure or even an effective treatment. I think the reason that so many of us newbies run to the CRABS is because we believe it will give us a chance. Maybe the reason that long time MSers do not is that they had no other choice than to live without any treatment and don't see a reason to start now. with drugs that seem to carry risks worse than MS. It would probably take something very promising to impress them. I just hope that if they do get a clue as to what is really going on that it will be in time to help all of us in some way. I think that we all deserve that.