Gene therapy Luxturna now reimbursed in Quebec for people with previously untreatable inherited vision loss

17 October 2022 - Quebec leads the way as the first province to reimburse Luxturna (voretigene neparvovec) for previously untreatable inherited ...

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Novartis and the pan-Canadian Pharmaceutical Alliance conclude negotiations for Luxturna, a gene therapy for previously untreatable inherited vision loss

20 September 2022 - Novartis Pharmaceuticals Canada and the pan Canadian Pharmaceutical Alliance have successfully concluded negotiations for Luxturna (voretigene neparvovec), ...

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CADTH ruling on Spinraza (nusinersen) extinguishes hope for adults needing treatment for spinal muscular atrophy

30 August 2022 - CADTH recommends against reimbursement and access to potentially life-altering treatment for adult spinal muscular atrophy patients, discounting ...

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Draft CADTH recommendation for Spinraza (nusinersen sodium) fails adults in need of treatment for spinal muscular atrophy

20 May 2022 - CADTH does not accept new evidence demonstrating Spinraza's effectiveness and safety for treating spinal muscular atrophy – ...

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Novartis applauds Quebec, the first province to list Zolgensma for the treatment of paediatric patients with spinal muscular atrophy

15 October 2021 - Public reimbursement under the Régie de l'assurance maladie du Québec, effective October 20th will apply for children ...

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Novartis and the pan-Canadian Pharmaceutical Alliance complete negotiations for Zolgensma for the treatment of paediatric patients with spinal muscular atrophy

13 October 2021 - Novartis Pharmaceuticals Canada today announced that it has completed negotiations with the pan-Canadian Pharmaceutical Alliance for a ...

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Alberta family waiting on approval for expensive, life-saving drug for young boy

23 March 2021 - Reign Johnston turned 2 on March 5. One of his grandpas and an uncle came to ...

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Alberta announces funding for pricey gene therapy drug Zolgensma

Alberta Health Minister Tyler Shandro announced funding Wednesday for the gene therapy Zolgensma, which is used to treat toddlers with ...

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Newly approved treatment could save a young child in Edmonton with a rare disease. It costs 2.8 million dollars per dose.

19 December 2020 - Reign Johnston is a happy baby who enjoys painting as much as playing with toys. His green ...

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Canadian baby with spinal muscular atrophy to get ‘world’s most expensive drug’

20 October 2020 - A little over a year ago, the idea of raising US$2.125 million to receive the “world’s ...

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B.C. family nearing finish in race to raise $2.8 million to treat baby's rare disease

8 August 2020 - Parents hope funds will pay for expensive therapy not approved in Canada for type 1 spinal muscular ...

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'I need something to move forward,' says Edmonton mom waiting for approval for son's life saving treatment

24 July 2020 - The family of a little boy in need of a $3 million treatment says they have ...

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'Heartbreaking': Alberta families describe waiting for life-changing drug to be made available in Canada

17 July 2020 - More families are hoping a one-time treatment option for a rare condition will be made available ...

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Clock ticking on Edmonton family's hope for $2.8 million drug treatment for toddler son

 3 July 2020 - Family hoping Alberta Health will pay for new drug that must be administered by mid-July. ...

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B.C. teen with rare disease wins fight to receive costly drug from province

19 May 2020 - Health ministry won't explain change of heart in granting Miles Ambridge treatment for spinal muscular atrophy. ...

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