Prime Minister David Cameron was yesterday drawn into a row over the provision of drugs for rare illnesses after he was confronted over the case of a six-year-old boy from Yorkshire.
NHS England bosses were due to make a series of decisions next week over the provision of treatments for dozens of conditions.
But the process has been thrown into chaos after a legal challenge to the “flawed” system to decide which treatments to commission.
The Yorkshire Post has reported how Sam Brown, six, of Otley, near Leeds, has shown major improvements in symptoms of a rare and incurable degenerative condition following a trial of a drug called Vimizim.
NHS chiefs were next week expected to refuse to fund the drug using a new scorecard system to compare therapies, bringing Sam’s treatment to an end.
Yesterday at Prime Minister’s Questions, Leeds North West MP Greg Mulholland urged Mr Cameron to reinstate a previous system to appraise drugs for rare conditions which was scrapped in the wake of the Government’s controversial NHS reforms.
The Liberal Democrat welcomed the Prime Minister’s pledge to take up the issue with Health Secretary Jeremy Hunt but called for urgency.
He said: “With NHS England scrapping its inadequate processes, any delay in these children getting the drugs they need could severely impact on their conditions.”
Sam’s mother Katy Brown welcomed NHS England’s admission their process was flawed. But she said: “There’s nothing confirmed or guaranteed over when or how a decision will be made. There’s a huge amount of uncertainty and we will be pushing for clarity over when a decision will be made.”
In its legal response, NHS England said the process had been put on hold. The scorecard could be retained or “jettisoned entirely” and once a decision had been made on the process to be used, a public involvement exercise would be carried out.
It said patients receiving Vimizim would continue to get it.