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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

        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



        American associations should complaint against Spiranza

        Sorry for my bad english. i speak french

      • #19982
        DeAnn R

        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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