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Calls to make drugs for rare conditions available

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  • November 18, 2010 at 10:05 am #73322
    Calls to make drugs for rare conditions available

    The Muscular Dystrophy Campaign is supporting the calls of a number of leading neuromuscular clinicians for changes to the regulations on orphan drugs – treatments for very rare conditions – to ensure that patients with these conditions have access to available, cost-effective treatments.

    The British Medical Journal has today published an open letter from the clinicians to the Prime Minister and Health Secretary expressing their concerns that the current system pushes up the cost of orphan drugs, and does not work in the best interest of patients with very rare conditions.

    Read the full story and letter

    mesamb
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    November 18, 2010 at 3:11 pm #77370
    Re: Calls to make drugs for rare conditions available

    Eventhough the NHS funding is supposed to be ‘ring-fenced’ and rumurs that NICE is a qango for the chop, any drug has a potential to be wiped from the ‘preferred list’, making it even more indecisive for any new drug ready for classification.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
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    November 24, 2010 at 9:42 pm #77371
    Re: Calls to make drugs for rare conditions available

    The ‘postcode lottery’ will also have to be overcome.

    My area of East Kent will prescribe CoQ10 as Ubidecarenone on the NHS for Mito. West Kent wont :shock:

    mistynow
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    Joined: 15/10/2010
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