The battle for Finley and others with Cystic Fibrosis is not over

(01 November, 2019) Editorials

Pressure may yet then be needed to ensure that profiteering does not put these vital medicines out of the reach of children like Finley.

32949Finley pictured at The Den

Victory at last! This week the News reports how Millwall-mad youngster, Finley Shoults, will finally get access to life-saving treatments for his Cystic Fibrosis.

The nine-year-old’s family had appeared in a front-page appeal in this paper earlier this year – alongside other affected Millwall fans – to call for an agreement to be struck between the NHS and pharma company Vertex over ‘miracle’ drug Orkambi.

Last week that agreement was finally struck, meaning thousands might get access to treatment to extend their lives and enhance the quality of them. The NHS and Vertex had been arguing about the price of its drugs for years before an agreement was reached, despite the products being available in other European countries.

But as Finley’s dad tells us, Orkambi is not a cure for Cystic Fibrosis.  Research is still needed, and that means donations to charities which fund research into this serious genetic condition are also needed.

The battle, too, may rear its head in the future. This is a time-limited agreement and affects England only.

Pressure may yet then be needed to ensure that profiteering does not put these vital medicines out of the reach of children like Finley.

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