In a unique decision, which will give hope to people who have family members being denied experimental treatments by the NHS on costs grounds, the NHS has been ordered to provide a pioneering new drug to a teenager whose bright future was threatened by a rare medical condition. Although the treatment would cost up to £13,000 a year, and had not yet been approved for prescription on the NHS, the High Court ruled that it was an exceptional case that deserved funding.

The 17-year-old girl suffers from cataplexy, a condition which causes muscle weakness brought on by emotion. In her case, her knees tend to buckle each time she laughs. She is also stricken by narcolepsy, which means that she constantly falls asleep during the day and can get little rest at night.

None of the usual treatments had worked for the very popular girl, who had lost many of her friends due to her condition. Her hopes of getting into a leading university were in jeopardy and she could no longer take part in games at school. She was gaining weight and the lack of appropriate treatment had caused her emotional and psychological harm. Her lawyers argued that treatment with the American-made drug provided her only chance of returning to a normal life.

In upholding her judicial review challenge, the Court found that NHS England’s refusal to allow her to be prescribed the drug was insupportable. The treatment would be cost effective and her health would be gravely compromised without it. Ordering that she be given the drug on the NHS for a three-month trial period, the Court concluded: “If she is not exceptional, who is?”


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