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Real cost of Gilenya.Right to Patient Privacy

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    Real cost of Gilenya.Right to Patient Privacy

    Hello everyone,

    I apologize for the crude copy and paste below. Read the second paragraph, within section "A", where it begins, "I Authorize the Novartis Group...".

    This is direct from Novartis' form that I just received. Basically, if you refuse to sign, you "may" not qualify for their reimbursement program, which has been so heavily touted. Pretty unbelievable. Actually no, it's not. Nothing in life is free. You trade your Federal rights to Patient Privacy, for their financial assistance.

    *****copy and paste removed as per MSWorld guidelines*****

    #2
    Seems pretty much expected to me.... they help out financially and in exchange get to use your info for their research/development/etc.

    I think the price is out of control for so many meds in this country especially, we basically pay for the research and development and it definitely feels like gauging at times. But in the end, the company wants people to use the drug so they can make money off it. If they are going to make less money off of it by giving someone assistance they are going to want some value in exchange, in this case your personal health info.

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      #3
      It looks like CYA to me - once the information is beyond the hands of a "covered entity" - that is, an entity not required by law to obey HIPAA privacy regulations - Novartis cannot guarantee they won't use it for purposes beyond the contract. So Novartis doesn't want to be held responsible for that.

      There have been other cases where pharmas contracted out some services (disease management in people with diabetes) and of necessity they included confidential information. Than they got sued for it and lost. They don't want that to happen again.

      And yes, your personal information is valuable for marketing purposes, so they subsidize the cost of giving "free medicine" by generating revenue from personal data.

      This is what happens when healthcare is delivered in a largely "for profit system." But of course without the profit motive companies like Novartis might not go to the expense of developing new drugs. I am not so thrilled that the development may be subsidized by government research grants (our tax dollars) and then they reap the profit, while we pay through the nose.

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        #4
        Hi, good call Airfare, on the CYA. That was the reason I have now learned. So, less paranoid and angry .

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