Saturday, September 12, 2009

Don't Believe Everything That You Read

Unless you read it here, of course...

As somebody who keeps a close eye on MS related news, literally each and every day I come across news articles and press releases touting some amazing new medical breakthrough or groundbreaking drug therapy that promises to smite the MS beast. These bits of news are quickly gobbled up by the various Internet MS message boards, and generate all kinds of excited chatter in the virtual MS world.

The e-mail inboxes of MS patients are often filled with notes sent by well-meaning family members and friends, breathlessly announcing these findings. Now, there's nothing wrong with hope and optimism, as we'd be doomed without them, but it's important that patients learn to keep things in perspective, if only just to keep from suffering repeated disappointments.

The truth of the matter is that most of the breakthroughs generating these headlines amount to far less than meets the eye. Just today, there is news about a group of scientists who have identified two genes that seem to be vital in determining the severity of MS. Reading a little bit deeper, though, reveals that this discovery was made on mice, and the genes in question are mouse genes. I like mice as much as the next guy (as long as they stay the hell out of my house), but the simple fact is that MICE DON'T GET MS.

== Summary == g...Scientists induce mice to get diseases that kind of resemble MS (most often, an allergic reaction called EAE), and then test all kinds of things on these mice to see if they'll affect the phony MS that the mice have been given. Quite often, the drugs and therapies being tested prove to have a dramatic effect on the mouse MS imposter. So often, in fact, that I've come to believe that staring intently at a stricken mouse, or talking lovingly to it, will cure it of this MS pretender (note to self: get some mice, make them gimpy, apply for MS research grant, tell mice that you love them, schedule press conference). Unfortunately, the same benefits rarely carry over to humans, because, as I mentioned before, MICE DON'T GET MS.

Another flavor of MS news item that often creates a frenzy are early-stage drug trial results, typically released by the pharmaceutical company developing the drug in question. In order to meet FDA approval, experimental drugs must go through a three stage trial process. Each of these phases are usually double blinded, placebo-controlled trials, in which one group of patients is given the actual test drug, and the other a placebo. The trial process generally takes about 8 to 10 years.

Very often, the results of successful early Phase 1 or Phase 2 trials are loudly announced to the world, setting off a wave of excitement among MS patients starving for optimistic news. Tellingly, these announcements are usually found in the financial or business pages of newspapers or Internet news sites. Why is that, you might ask? The answer is simple, but somewhat disheartening. The primary motivation behind the release of such results is not to give MS patients hope that they can hang their hats on, but rather to pump up stock prices (in the case of the big public pharmaceutical companies) or generate investor cash (in the case of smaller, startup firms). Very early in my MS career, my neurologist, Dr. Big Brain, warned me to not take any of these reports too seriously, as the primary motivation behind them is financial.

One must never forget that the pharmaceutical business is a mega-industry in this country, and that the fortunes, both literally and figuratively, of pharmaceutical company executives rise and fall with the stock prices of the companies they run. In fact, as public companies, the big pharmaceutical companies are mandated to place the interests of their stockholders before the interests of the patients taking the drugs they produce. These companies must generate ever-increasing profits, or risk the calamity of falling stock prices.

There have been recent revelations of pharmaceutical companies burying unfavorable trial results data, and sometimes even misrepresenting such data (in other words, lying about it). Even when data is not actually misrepresented, the methods used to statistically analyze it can influence the favorability of the data one way or another. Naturally, drug companies choose to analyze the data in the fashion most favorable to the outcomes they desire, but very often, this does not result in the most accurate assessment of a drug's effectiveness and/or risk to patients. Unfortunately, the reported results of these giant shell games often toy with the emotions of desperately ill patients hungering for a little good news.

All in all, it's best to take much of the news generated about MS with several grains of salt. Between mice that don't get MS, and the financial wheelings and dealings of the pharmaceutical industry, much of the information out there just isn't very reliable. Don't get me wrong, I believe that there are great strides being made in battling the disease, but if even one quarter of the positive news reported about MS were true, the illness would have been cured years ago...

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  1. Eeeeeeeeeeeek! Good points.

    And the wheelings and dealings come from those who do not operate with wheels.

    Perhaps the wheels of progress turn in an entirely different direction than those of us facing MS need them to go . . . .

  2. Hi Marc,
    So having read your post, we need to get a chain of rumours going that will bring down the share price of drugs companies and cause widespread panic and a decxrease in their profits.

    Drug companies are not interested in finding a cure, they are drug dealers,.

    This illness and others would have been cured years ago were it not for the vested interest of the pharma industry in keeping us all tied to them.

    We need research done for medical advancement not financial enrichment.

    Have a good weekend.

  3. Marc,

    I completely agree! It's all about the money.

    I've been upset with Biogen Idec who makes Tysabri (among other MS drugs).At the end of July, they stopped disclosing on a weekly basis the number of new patients with PML. Now Biogen plans on having the pharmaceutical representatives tell the doctors about new cases! Do you really think they will tell the truth, and if they do, do you think they will be expedition about it? This infuriates me!

    I was able to find out about the new cases on the Internet by setting up a Tysabri Google alert. I was able to keep up on the new cases of PML before July, but now all I get are e-mails about Biogen and Elan's fight in court. I believe the company's decision to discontinue the reporting was based on their stock prices. Every case of PML caused their stocks to plummet. I think it’s a way for Biogen to hide their true numbers. I would be happy with a monthly report. I simply do not trust the word-of-mouth reporting from the pharmaceutical rep to the doctor.

    I'm on a holiday from Tysabri right now and I don't want to go back on it. I'm currently on LDN and hope it keeps me exacerbation-free. Time will only tell. I have an MRI scheduled in November.

    I'm so disgusted with Big Pharma!


  4. And I'm so conflicted over this, Marc. The idea that pharmaceutical companies place stockholder interest before patient interest, distresses me.

    But, at the end of the day, pharmaceutical reps, CEO's and stockholders are just like any other human being, who, in one way or another, are also impacted by incurable diseases in their personal lives.

    So, wouldn't they also be eager to see medical breakthroughs? I know I sound naive but I really don't know where I stand on this issue. Thanks as always for another well reasoned post.


  5. Marc --great post--I read all the comments and yes Lynn--you are naive. Most people act in their own self interest--and there a lots of studies to prove it. How happy do you think the makers of Tums would be if someone came up with a formula that would get rid of gas with just one pill that was really cheap and worked all day? Oh yeah...that's right, someone already did and they bought them out several years ago and ceased manufacturing it. It was called Di-Gel.

  6. Always a great read, Marc! You really do rock. ;)