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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic has 1 reply, 2 voices, and was last updated 4 months, 1 week ago by DeAnn R.

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      • #19961
        mehdi
        Participant

        The consumer defense association Test-Achats (Belgium) announced Wednesday the filing of a complaint against the pharmaceutical company Biogen before the Belgian Competition Authority. It denounces an abuse of a dominant position in the marketing, at a price considered exorbitant, Spinraza, a drug against spinal muscular atrophy, a rare and serious disease that mainly affects children. Test-Achats shows a gap of nearly $ 2 billion between development costs and revenues. In two years, Spinraza sales reached $ 2.61 billion for an investment of $ 648 million. Each dollar invested has brought in four times more, she says. Test-Achats sees in this case a new illustration of “unsustainable prices” practiced by the pharmaceutical industry, which can no longer be justified, according to her, by the protection of investments in research and development

        https://www.lalibre.be/economie/mes-finances/test-achats-porte-plainte-contre-la-societe-pharmaceutique-biogen-pour-un-medicament-a-plus-de-80-000-euros-5d381628f20d5a58a85ff05d?fbclid=IwAR0hO6-c1zt6heO2jDOfHm11Qh0VC4NYVeYgKfzHX1R5DqeDKdMQ3JGwwOA

         

        American associations should complaint against Spiranza

        Sorry for my bad english. i speak french

      • #19982
        DeAnn R
        Keymaster

        Thanks for sharing Mehdi. Unfortunately the article link is in French, so I couldn’t read it, but I do agree the price of Spinraza is exorbitant. My hope is that as more drugs enter the market it will create competition and drive prices down.

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