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Recently, Canadian drug company Concordia International was accused by the Competitions and Markets Authority (CMA) of overcharging the NHS by more than £100m for a thyroid drug — liothyronine — which went from £4.46 a pack in 2007 to £258.19 by July.

Until this year, Concordia was the sole supplier of the drug — the only effective option for around 15 per cent of people with a thyroid hormone deficiency.

Doctors could prescribe it ‘off label’ — that is, for conditions the drug was not originally licensed for.

Keveyis is a so-called orphan drug, meaning the number of patients who can benefit from it is too small to make it profitable from sales.

Sherri Coleman recently spent a week paralysed, imprisoned in her upstairs bedroom, because her doctors say they can’t give her the drug she needs.‘If it hadn’t been for Violet, my 11-year-old daughter, and mum, Rose, bringing me drinks and food, I would have starved to death,’ she says in measured tones that belie the desperation of her condition.

Sherri, 41, was born with a rare form of muscular dystrophy, inherited from her father, that worsens with age, causing her body to become paralysed at random — the attacks may last anything from a few minutes to a number of days.

The former factory worker, who lives in Huntingdon, Cambs, with daughter Violet, can barely walk — and is largely housebound.

She is matter of fact as she describes her worsening condition: ‘I can only walk a few steps, and I risk falling over because my balance is so bad,’ she says.‘Daranide made a massive difference and since it’s been taken away I’ve had many more attacks.

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