Hi! Thank you SO MUCH for your amazing support in signing our petition to reduce the price of the life-saving drug, Zolgensma, for Spinal Muscular Atrophy (SMA). We are getting close to 100k signatures but the SMA community still needs your support. Will you help to get more signatures by sharing this petition on social media? Here is a link to share:
Do you know that according to Novartis, children with SMA treated with Zolgensma pre-symptomatically "achieved age-appropriate motor milestones including sitting, standing and walking; required no ventilatory or feeding tube support"?
BUT this picture looks differently if Zolgensma, that currently costs $2.1 million per treatment, is administered to babies after first SMA symptoms appear! As we know, SMA is a progressive disease so it’s imperative to provide the treatment as early as possible to halt irreversible motor neuron loss. Unfortunately, for many suffering babies globally, the drug sold by Novartis, is withheld from those babies because Zolgensma is priced at the exorbitant level that families simply cannot afford it. Crowdfunding largely delays the treatment, though, by several months, and even years. During that time, many babies in need already lose some motor neuron and are put on ventilators or feeding tubes - suffering gravely - before Zolgensma is even provided to them. In this latter, but common scenario, families are forced to pay the same amount of $2.1 million per treatment, while their babies cannot reap the full benefits of Zolgensma!
Unless Novartis lowers the cost of $2.1 million per treatment for Zolgensma, ONLY THEN the treatment has a potential to be provided to babies right upon SMA diagnosis as more countries would be able to cover the drug cost. Therefore, babies with SMA would be able to achieve age-appropriate motor milestones such as sitting, standing, and walking!!
We are also on:
Let's continue supporting this cause for babies with SMA that endure excruciating pain!
Thank you.