Hi. Thank you for your support. We crossed over 3,600 signatures on our petition to reduce the price of Zolgensma that treats Spinal Muscular Atrophy (SMA). Will you help me to get more support by sharing this petition on social media (Facebook, Instagram, Twitter, etc.)? If enough of us sign, we can't be ignored! Here's a link to share:
While treatments for rare diseases so-called orphan drugs, are likely to be expensive, there should be a reasonable pricing set in place by Novartis.
According to the Institute for Clinical and Economic Review (ICER), a Boston-based independent nonprofit organization, to "reach commonly cited cost-effectiveness thresholds of $100,000-$150,000 per QALY gained, Zolgensma’s price for Type I SMA would need to be between $310,000-$900,000 per treatment. To reach alternative thresholds of $100,000-$150,000 per LYG, Zolgensma’s price for Type I SMA would need to be between $710,000-$1.5 million per treatment."
But by setting the price of Zolgensma at $2.1 million, Novartis is using unfortunate situations of newborns and toddlers diagnosed with Type 1 SMA by delaying, and in some situations, not providing the existing treatment to affected babies.
Thank you!
Ewelina