Greg MulHolland MP led a debate in parliament yesterday (16 June 2015) to highlight failures access to medicines for rare diseases.  The debate was well-attended debate supported by MPs from all political parties.  Mr MulHolland highlighted Morquio Syndrome, Duchenne Muscular Dystrophy and Tuberous Sclerosis Complex. 

Mulholland  questioned why people with Tuberous Sclerosis Complex have waited 28 months since the drug was approved, a wait during which some people lost their lives to the disease:  He also criticised NHS England for “a clear deficit in accountability” after they took 11 weeks to reply to a letter he sent on 27th March, and he quoted the Department of Health’s own Framework Agreement with NHS England which allows ministers to intervene if NHS England is considered to be failing in its duties.

Responding at the end of the debate, life sciences minister George Freeman MP said he had discussed with the Chancellor future funding for drugs.

Commenting afterwards, Mulholland said:

“Many MPs took the time to attend today’s debate and shared experiences of families around the country who had also been let down by NHS England and its bureaucracy.  Hearing their stories at today’s debate showed why we need a complete overhaul of the system. Other European countries are getting ahead while we lag behind because of bureaucracy.  MPs will have heard the strong case there is for the minister to intervene and, given NHS England’s repeated failures, I will continue to urge him to do so.” 

You can read a full transcript of the debate here: