#AceNewsReport – Jan.02: Editor says as we enter the ‘ Golden Age ‘ for some it is the ‘ Beginning of the End ‘ for others who will become like the ‘ thin cows being eaten up by the fat cows ‘ as business and corporate entities find a new way to ‘ Hold People and their Families to Ransom ‘ by creating a market of WANT over NEED: Here in this story published by Post and Wires today is an example….but like l always say believe with your head or your ❤️
Novartis plans lottery to give away world’s most expensive drug for free
By Noah Manskar of New York Post and Wires
Pharmaceutical giant Novartis is setting up a lottery-style program to give the world’s most expensive drug to babies for free — a move that has some patient advocates concerned: The company next year plans to give away up to 100 doses of Zolgensma, its $2.1 million treatment for spinal muscular atrophy, a rare genetic disorder that causes children to lose control of their muscles.
The so-called managed access program — meant for kids younger than 2 living in countries where the drug has not been approved — will use a bi-weekly draw to determine which patients get the one-time treatment: Those who aren’t chosen will stay in the pool as long as they are still medically eligible.
The program aims to expand access to a potentially life-saving drug that has only been approved in the US: But one patient group is skeptical that picking “lucky” kids is the best way to do that……..“We are yet to be convinced that a health lottery is an appropriate way of meeting the unmet medical needs in this severe disease,” the British advocacy group TreatSMA said in a statement.
AveXis, the Novartis subsidiary that developed Zolgensma, said it created the program in response to growing demand for the drug outside the US: The US Food and Drug Administration approved it in May, but AveXis said it is still pursuing registration in nearly three dozen countries.
The company said it worked with a “bioethics advisory committee” to develop the lottery program in the context of manufacturing constraints: AveXis plans to add doses to the program, which will start Jan. 2, every six months based on availability and patient need, according to a statement the company published Thursday.
“AveXis designed a program anchored in principles of fairness, clinical need and global accessibility to best determine the equitable global distribution of a finite number of doses that doesn’t favor one child or country over another,” AveXis said in the statement.
Zolgensma is one of just two drugs for spinal muscular atrophy that have been approved in the US: The other, Spinraza, requires recurring doses that cost $750,000 for the first year and $375,000 each year after that.
#AceNewsDesk reports ……………Published: Jan.02: 2020:
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