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02.03.20

NHS England approves funding for drug to help rare conditions

To celebrate World Rare Diseases Day, NHS England has confirmed it has struck a deal to fund a potentially life-changing treatment for people with rare conditions causing repeated bouts of fever, joint pains and swelling.

The NHS has said the treatment has been approved in an effort to help a small group of people who “suffer in silence” with periodic fever syndromes (PFS), a group of rare genetic conditions where the person’s immune system overreacts, resulting in frequent inflammation ‘flares’ involving chest or join pains, headaches, mouth ulcers and skin rash.

Canakinumab, the drug a deal has been struck to fund, modifies the immune system, turning off the inflammation process, significantly reducing the number of ‘flares’ children and adults experience.

The deal with a global pharmaceutical firm has been agreed after negotiations led by the NHS, as part of a major programme to ramp up access to innovative treatments, while freeing up funding for frontline patient care through smarter procurement.

By agreeing this deal, the NHS now has access to a more effective, convenient drug with fewer side effects to existing treatments.

It follows contracts agreed in recent months to introduce new drugs for restoring sight and cystic fibrosis.

READ MORE: NHS will ‘unleash full innovation potential’ with new drugs and test beds

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.”

There are an estimated 168 patients in England with these diseases, both children and adults, and around 80% of these would be prescribed canakinumab.

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