“NHS England uncertainty on drug funding must not mean children’s lives put at risk”, says Greg Mulholland MP

Greg Mulholland: “NHS England uncertainty on drug funding must not mean children’s lives put at risk”

As NHS England suspends its process for commissioning treatments for extremely rare diseases, Greg Mulholland, Member of Parliament for Leeds North West, has demanded that the sudden uncertainty must not mean children’s lives are put at risk and that they must continue to get the drugs they need until NHS England draws up new processes.

This follows the case of six year-old Sam Brown from Otley, whose parents Katy and Simon have campaigned hard to ensure NHS England continues to fund Vimizim (also known as elosulfase alpha), the drug their son needs for the disease he has, Morquio Syndrome. Sam is one of only 88 children and young adults in the UK with the disease.

Last week, a fellow Morquio sufferer sent an urgent pre-action letter to NHS England, threatening Judicial Review proceedings challenging the scorecard system used for deciding which lifesaving treatments to commission, highlighting that there is no published policy explaining its use and that there had been no public consultation over its use.

NHS England has now replied to confirm that the process for commissioning treatments is undecided and the process suspended.

The decision from NHS England comes as its Clinical Priorities Advisory Group (CPAG) was due to meet on 15th December to decide which of 60 drugs it should continue to fund, including Vimizim.

NHS England have stated in their letter to Kamal’s legal team: “The next step is for NHS England to consider in December the decision-making process(es) to be used in specialised commissioning and how treatments should be prioritised, the CPAG meeting scheduled for this week should be deferred; the use of a scorecard may be retained or jettisoned entirely, and if retained the form of the scorecard may be varied and before making a decision on the process(es) to be used, NHS England will carry out a public involvement exercise on its proposals. Once a decision-making process has been decided upon, NHS England will go on to adopt a policy on elosulfase alpha for mucopolysaccaridosis IV Type A [Morquio Syndrome], in accordance with whatever that process may be.”

This situation could have been avoided had NHS England not disbanded the Highly Specialised Commissioning Service in April 2013, due to their more appropriate processes which were accepted by sufferers of extremely rare diseases. Greg Mulholland MP has labelled this disbanding “a total mistake”, and is calling for this Service to be reconvened urgently on an interim basis until NHS England draws up new processes.

For the full article by Greg Mulholland please visit this page.