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NHS confirms deal with Novartis to fund treatment for rare periodic fever syndromes

NHS England has confirmed a deal with Novartis to fund a life-changing treatment for people with rare conditions which cause repeated bouts of fever, joint pain and swelling.

The drug, canakinumab, will now be available for patients with periodic fever syndromes (PFS) following negotiations as part of a major programme to ramp up access to innovative treatments.


Canakinumab modifies the immune system by turning off the inflammation process and significantly reducing the number of ‘flares’ children and adults experience.

Patients with three different types of PFS conditions will be eligible for treatment: familial Mediterranean fever, mevalonate kinase deficiency (also known as the hyperimmunoglobulinemia D syndrome), and tumour necrosis factor receptor-associated periodic syndrome (TRAPS).

There are around 168 patients in England with these diseases and around 80 per cent of these would be prescribed canakinumab.

Sir Simon Stevens, chief executive of NHS England, said: “Some illnesses affect a small number in a big way, which is why the NHS is increasingly bringing innovative, specialised and targeted treatments to people who need them.

“This latest new treatment has the potential to significantly improve the lives of children who bear the burden of bouts of crippling pain which blights lives and puts strain on families. It’s the latest in a line of major deals NHS England has successfully negotiated, which show that when drug companies play ball with the NHS, taxpayers get a fair deal and patients get cutting-edge treatments.”

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