ACCESS TO VIMIZIM

That this House is concerned that it has been 14 months since the treatment Vimizim was licensed by the European Medicines Agency in April 2014; notes this was a treatment for which the UK led the clinical trial, with the first person in the world receiving the drug being a child in Birmingham; expresses strong concern that no decision has been made on reimbursement following months of process failures; further notes that this is despite the treatment now being available in Czech Republic, Hungary, Austria, Denmark, France, Germany, Greece, Israel, Italy, Netherlands, Norway, Portugal, Spain, Sweden, Bahrain, Kuwait, Oman, Qatar, Saudi Arabia, United Arab Emirates, Russian Federation, Turkey, Indonesia, Japan, Brazil, Argentina, Chile, Colombia, Canada and United States; is further concerned at this delay given numerous assurances that continuity of drug will occur to those on the clinical trial; expresses urgent concern that, following a lack of engagement and failed process, compassionate free drug provided by the pharmaceutical company will cease by July 2015; believes it is unacceptable that children and young adults are being repeatedly let down and suffering the consequences of bureaucracy; urgently calls on NHS England to provide interim funding for those with ultra-rare progressive conditions who do not have the luxury of time and not immediate access to this licensed life changing treatment.