NHS England Abandon Scorecard
Following our petition highlighting that the NHS Scorecard denied access to treatment for ultra-rare diseases and in supporting one of our ten year old members with Morquio to legally challenge the scorecard system, we welcome the decision by NHS England to abandon the scorecard.
Christine Lavery OBE, Chief Executive of the Society for Mucopolysaccharide Diseases said, “This decision is bittersweet as the ongoing delay means that a number of members who would benefit from treatment are denied access until a funding decision is made. Vimizim, the treatment, was licensed at the end of April 2014 across the EU and since then children and adults with Morquio A syndrome are receiving funded treatment in over 21 countries including Germany, Spain, France, Italy and Czech Republic. Currently the pharmaceutical company is providing the treatment compassionately in the UK but we are unsure how much longer they will continue to do so. Patients with Morquio A syndrome can deteriorate quickly without treatment, which is why urgent approval is essential.”