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Como Esta? Okay, from what I have read it is not so Hot!
I happen to agree in principal with Geezer, but de facto side more with Rex as to what this all means. I like being nice most of the time, but I am getting more than a little peeved by the SEC's lack of regulatory oversight. We do want freedom of speech, but shouting fire in a crowded theater is less likely to do damage to our fellow human beings than what is being printed and propagated about Tysabri.
I will start first of all by saying this...
The Patients have won back the right to be treated with the best Medicine available. Winning the right was just the first step, not the battle to end all battles.
We now face a most daunting task. Making our voices heard! I am not naive enough to think one little post by a Woolybooger gets that much notice. I do know however, that a couple of my posts have been quoted in National News in well-read online Articles. Maybe it's the moniker; maybe it was the content. Regardless, we don't need to think we are helpless or invisible. Granted, I wish I was a Motley Fool Big Wig who could write something and get it published under The Motley Fool.com logo and all, but sometimes we just have to go "over their heads". 8^)
I don't want to repeat the science. It has been stated and is clearly and overwhelmingly in favor of Tysabri as the best medicine available for MS [Multiple Sclerosis]. Plain and simple it is the best. The best in preventing relapses. The best in seeing symptoms resolve. The lowest side effects profile.
I don't want to say it is without risks. It isn't. I do want to say that from a purely numbers perspective that this is by no means one of the most dangerous. Can we place cancer and MS in the same league? Is it fair to either group to make one out to be more serious? Nah, but as far as medications go, the cancer treatments I deal with can and have been more deadly than what research has told us mono therapy with Tysabri will do. Try Cytoxan, try Cisplatnin... heck, the list is not short and by no means pleasant. How many times do you think we have to withhold further treatment because we make them so sick from the treatment that any more "help" would kill them? Their white blood cell count, and platelet counts are dangerously low...talk immunosuppression. Similarities exist. No further treatments means progression and death from the disease. Some cancer patients do indeed get cured. Can we say the same for any MS patient? Sadly... No! Do we speak of 5-year survival rates with Cancer patients? Sure we do. It is a measure of success. Living 5 more years is a success. Some actually age out of follow up. They get their cure. MS patients will never do so. Therefore they need the best and most aggressive treatments available and making the absurd decision that the best medication be reserved for anything other than first line treatment makes no sense what so ever. It is morally, ethically and socially reprehensible. Anyone who writes something to the contrary is not operating with a full set of faculties or is morally corrupt. The risk/benefit ratio, with any set of data we have today, is so one sided that any Neurologist/Internist who does not put Tysabri on the table for each and every patient to consider is operating with a set of values that goes against all Medicine rightfully should stand for. Yep, I said it. Any Doctor who does not offer Tysabri to his patients is doing them a disservice, and hopefully they will leave his or her practice without any reservation.
I do amniocentesis for several different reasons for our pregnant gals. The standard risk rate we quote our patients is a complication of 1 for each 200-250 procedures. 4-5 times that of what is bandied about for Tysabri. You folks getting that? Do I hesitate to proceed after the lady or couple decides that is what they desire? Well the answer is sometimes, "Yes". They may have uterine fibroids that make the procedure more risky. They may have twins or triplets that means multiple sticks. They may have low amniotic fluid volume making my "target" smaller and more difficult. Thing is, it is all part of the equation. I know for a fact it will be no different for Docs treating those with MS. They will have patients who will not decide to take the risk. But they should be given clear and unbiased options from the get go. The Docs will select out some that just should not receive the treatment for other underlying reasons. Lets get real. How many ladies do you think I select "out" of doing the amnio? Hmmm, I think it has been one in 17 years.
We are dealing with 400,000 patients with MS right? So we say 1-5% will be selected out for reasons that present a clear and present danger. The other 380,000 patients are still left to make up their own mind. I suppose we could have some Docs who will just be too chicken to put their malpractice premiums on the line and will do the least they can get away with. Surely you know that all us don't do amnios. Some just are too nervous about placing that 10cm 23 gauge spinal needle into a ladies tummy, into the uterus, and 1/2 cm from an infant's chest, face, and private parts. Go figure huh?
It wouldn't be fair on the one hand to ridicule someone for their reservations in treating someone with MS, but it also would seem reasonable that if you are that fearful you need to place that patient into someone else's hands. Don't think I haven't seen some of my associates talk someone out of an amnio because of their own hesitation rather than the patients.
I know we have strayed far afoot, but the bottom line is we are faced with either greed on the one hand from competitors who will do anything they can to keep lining their pockets. Yes even let folks live and die in misery. And on the other hand we have Docs who are afraid to lose a patient to another physician. Rather than turn them over to someone who is willing, able and competent to treat them with a more powerful and effective medication, they will continue to promote the status quo for self-serving reasons. Sad, but true. As Rex pointed out, this field is no different than any other.
Maybe we can put something together that we can turn into a hot ticket with The Washington Post? You know our society today loves a scandal. Price fixing, Insider trading, Accounting scandals, Weapons of Mass destruction. Stories that are lies about medications...does it matter that some have died and will continue to die as long as those stories are allowed to continue and slow down the return of Tysabri? It may be hard for the print Media to "Tell on itself"; who has the stones to do that?
It ain't Sex, Lies and Videotape, but I could see an angle of how to make a Movie about all of this...
Here's hoping we get some inspiration to take the next step.
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