Thank you for sharing our petition on social media. This helps tremendously to raise awareness of Spinal Muscular Atrophy and the issue around the drug's (Zolgensma) astronomical price. We have garnered over 85k supporters so far and a link to our petition is below.
We also have some new developments that have recently unfold. Do you know that in a "challenge to Novartis (NVS), a Dutch advisory body has recommended that the government not cover the cost of the Zolgensma gene therapy unless the company cuts the price in half and agrees that it will not get paid without a so-called pay-for-performance arrangement."?
The article continues that "The National Health Care Institute, known as Zorginstituut Nederland, explained in a statement that Zolgensma, which is used to treat a type of spinal muscular atrophy that is generally fatal in children, is a “promising drug. But the results of the research do not yet show that convincingly and do not justify the high price that the manufacturer asks for it.”
Zolgensma, a one-and-done treatment for which the company would charge approximately $2.5 million in the Netherlands, is the world’s most expensive drug. And the pricing has caused a sensation as public and private payers grapple with reimbursement issues. Not only did Novartis prompt concern about payment models for gene therapies, but also ushered in a new era of debate over the cost of medicines."
We are on:
Let's continue standing up for this change in unity!
Thank you,
Ewelina