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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 1 reply, 2 voices, and was last updated 1 year 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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