NICE have approved the life changing treatment Vimizim for those with Morquio A in England if delivered through the Managed Access Agreement, a first for NHS England and NICE.
Following weeks of collaboration, between the pharmaceutical company, clinicians, NHS England and ourselves the patient organisation, a Managed Access Agreement has been written and agreed. A Managed Access Agreement is a first for NICE and the positive decision is announced in accordance with the condition that a robust agreement is in place.
Today’s positive news from NICE comes after the announcement from Scotland last week that approval for reimbursement of Vimizim has been given to four children by their local health boards who are approving access on a case by case basis.
Individuals with Morquio have been anxiously waiting since April 2014 when the drug received marketing approval by the European Medicines Agency.
Christine Lavery Chief Executive for the Society for Mucopolysaccharide Diseases said, “We are delighted by today’s announcement that NICE HST have made a positive final decision but recognise this Managed Access Agreement being the only way forward for patients and avoid a No from NICE.
“The MPS Society has worked hard with all involved to ensure its sign off. It is hopefully only a short matter of time before Wales and Northern Ireland will alongside England and Scotland approve access to Vimizim.
“Thank you to everyone who has supported the Society and our members, in particular Greg Mulholland MP who has led the campaign tirelessly but also to the many other Members of Parliament who have been supporting their constituents and the Morquio community.
“It is hard to comprehend what these patients and their families have been through over the last 18 months and we are relieved that individuals who were not on the clinical trial will soon be receiving their first infusion.”