‘It will be too late for her’: Parents race to afford ‘world’s most expensive drug’
Discussion posted by: Arye ben-Shaoul
TORONTO — It’s only Eva Batista’s first birthday but for her parents, it feels like time is running out. By Eva’s next birthday, she may have already aged out of eligibility for a life-saving drug that Ricardo and Jessica Batista are racing against the clock to pay for. Their one-year-old daughter has spinal muscular atrophy (SMA) and needs to receive a single, one-time dose of Zolgensma before she turns two, or reaches an unspecified weight, for the drug to be effective. The rare neuromuscular disease causes muscle weakness and atrophy, impacting simple actions like Eva’s breathing, swallowing and the ability to hold her head up. Most SMA patients like Eva, who has the worst form of the disease, don’t live past the age of two.