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Mulholland: “PM must demand NHS England act urgently on much needed drugs”

February 4, 2015 5:02 PM

Today in Prime Minister's Questions, Greg Mulholland, MP for Leeds North West, called on David Cameron to intervene and get NHS England to put in place an interim solution for commissioning drugs for ultra rare diseases.

Since having suspended their flawed scorecard system, for deciding which drugs to fund, due to the threat of legal action, NHS England have not yet put a new process in place. They have begun public consultations which could take a further six months to complete, before putting in place a system to decide whether or not to fund the necessary drugs.

The decisions had previously been scheduled to be made on 15th December at a meeting of NHS England's Clinical Priorities Advisory Group (CPAG)- this meeting was called off by NHS England following the threat of legal challenge to its scorecard system. An interim process has not been put in place either. The key demand for campaigners is that this interim process be put in place while NHS consults on a new, permanent commissioning process.

The legal action had been brought by 10 year-old Kamal from Tooting, south London, who has the same ultra rare condition- Morquio Syndrome- as six year-old Sam Brown from Otley. Kamal and Sam are two of just 88 people in the UK with Morquio and both last week delivered a petition at 10 Downing St calling on the Prime Minister to get NHS England to act urgently. The previous week, the Muscular Dystrophy Campaign led a mass lobby of Parliament, followed by a petition drop at No. 10, calling for speedier access on the NHS for the Translarna drug, needed by 50 people in the UK with a rare mutation of Duchenne Muscular Dystrophy.

Mulholland and campaigners met life sciences minister George Freeman MP twice before Christmas and had set a deadline for an interim process to be put in place by the end of January. Drug company BioMarin, who produce Vimizim and are currently providing the drug for free and at their own cost, have announced plans to cease supplying the drug due to a lack of response from NHS England.

Speaking earlier today in Prime Minister's Questions, MP Mulholland said:

"Last week six-year-old Sam Brown from my constituency, with 10-year-old Kamal from London, came to see the Prime Minister to deliver personal letters to him about the NHS England failure to come up with a process to allow the NHS to fund the drugs they need for Morquio syndrome, which also apply to Duchenne muscular dystrophy. NHS England is still dragging its heels. Will the Prime Minister, who I know has taken an interest in this, please intervene to come up with an interim solution so that all these children can get the drugs that they need?"

Responding, Prime Minister David Cameron said:

"I well remember meeting the hon. Gentleman and the young boy with Duchenne muscular dystrophy syndrome. I have looked into this. The consultation is under way and will finish at the end of April. Following this, the NHS will make a decision as quickly as possible whether or not to routinely fund Translarna. I have discussed this with the Health Secretary and we will do everything we can to help."

Speaking afterwards, Mulholland said:

"I welcome the attention the Prime Minister is giving to this matter and his assurance that he will do everything he can to help. However, we simply cannot wait until the end of April for a decision. The whole point is that we need an interim process put in place while NHS England comes up with a new and proper process for deciding which drugs to fund. The original decision should have been made on 15th December until NHS England called off that meeting, so the clear moral and potentially legal responsibility is on them to make a decision now.

"The situation has also become all the more urgent with the drug company planning to cease supply of the drug Vimizim to Sam and Kamal, so the clock really is ticking."

Christine Lavery, Chief Executive of the Society for Mucopolysaccharide Diseases (MPS Society) added:

"On behalf of all the children and young adults affected by Morquio and Duchenne muscular dystrophy we are grateful for Greg's continuous support in pushing for crucial interim funding whilst these commissioning process failures are rectified.

"We are frustrated how long it is taking for NHS England to devise a decision making process and individuals with rare life changing conditions are suffering on a daily basis as a consequence as they continue to be denied access to treatment.

"The process consultation may finish at the end of April but it will be at least a further 90 days before a decision on funding is made, if the new process is suitable. Vimizim for Morquio, which was licensed in April 2014 is now available to patients across Europe including France, Germany and the Czech Republic with the notable exception being England. Interim funding from NHS England would provide reassurance to families desperate for the only treatment available and enable home infusions for patients currently travelling the length and breadth of the country for their weekly treatment."

(Pictured above: Greg Mulholland MP with Sam Brown, and parents Katy and Simon, at 10 Downing St on Weds, 28th Jan 2015)