'It will be too late for her': Parents race to afford 'world's most expensive drug'

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Today is Eva's first birthday. By the time she turns two, she might be too old to receive a gene therapy considered the 'world's most expensive drug.'

Ricardo and Jessica Batista with their daughter Eva. TORONTO -- It’s only Eva Batista’s first birthday but for her parents, it feels like time is running out.

“Some families never got the chance to celebrate their children’s first birthday with this disease. To have her here is a blessing,” her mother told CTVNews.ca over the phone late last month. Novartis recently filed for approval in Canada earlier this year and was granted “Priority Review status,” a spokesperson told CTVNews.ca in an email. “We are committed to working collaboratively with regulatory, pricing and reimbursement authorities across Canada in providing eligible patient access to AVXS-101,” they wrote. “We are eager to finalize discussions and partner on solutions as quickly as possible.

Source: Healthcare Press (healthcarepress.net)

 

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Happy Birthday to you, Eve.....sending you love and blessings..🥳🥳🙏🙏🇨🇦🇨🇦❤️❤️

It’s so sad that the drug can’t just be given for free - there can’t be that many cases? They’re making so much money from ongoing repeat scripts that this just doesn’t seem right.

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