Linda,
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yes, we do need to be informed. that is our job as patients. the job of the drug companies is to try to find new drugs. pretty basic....we criticize them for that!!!
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The job of drug companies is to discover and develop new drugs that will make them a lot of money....that's why they are in business. And there are a lot of good drug companies out there.
What we criticize here (and other MS forums) are drug companies that develop medications that haven't been thoroughly tested enough before being made available to the patients that will use them. Without going into detail, that is what happened to Tysabri when it was quickly approved, subsequently pulled from the market and then re-approved under some very strict conditions.
I don't think anyone is saying that patients shouldn't have the choice of using whatever drug they feel is right for them....as long as the patients have ALL the proper information before making that choice.
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yes, they are profit oriented. what if they gave up on MS and worked on other diseases? then we'd really have ourselves in an uproar.
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Believe me that won't happen....as long as there is the possibility of making a lot of money from a MS drug, big pharma will always be around!
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I am informed and choose Tysabri. I want everybody to have choices about what they take.
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And there is absolutely nothing wrong with that. But the vast majority of MS patients who choose to use Tysabri don't have the availability of obtaining this information like those who use the internet. If they made their decision solely based on what big pharma tells them or their docs, then that can be a problem. Do you think that Biogen would tell prospective customers that a number of patients died from infections during the trials? This kind of information had to be sought out and obtained by the press through the Freedom of Information Act. The lawyers of Anita Smith's family (patient that died from PML) had to go to court and force Biogen to make available the data of the trials so the lawyers could review the trial data! This is why we criticize Biogen and other drug companies who act like this.
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this is NOT about the drug companies is it? if so, i'm in the wrong place. I thot it was about Tysabri and getting help.....I have PRMS and nowhere else to turn. I'm grateful it is now available.
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It's all part and parcel without the two being separated. You aren't in the wrong place..you are attempting to obtain info to perhaps help you make a decision on what medication to take. What most here are doing is providing you with as much information as possible and it is up to you to make that final decision.
Harry