Givinostat Early Access Programme

James Small-Edwards AM moved and Krupesh Hirani AM, seconded the following motion:

"This Assembly notes the availability of the givinostat Early Access Programme for patients with Duchenne muscular dystrophy. The Early Access Programme is a compassionate use scheme put in place by the manufacturer while givinostat is being assessed by the UK’s health regulators, and makes the medicine available for free to the NHS until a decision is made.

This Assembly believes that the Givinostat Early Access Programme should be made available to everyone who is eligible and could benefit from the treatment, and applauds the work of charities Duchenne UK and Joining Jack for working hard to keep their community informed on the latest developments of the Early Access Programme, and for collaborating with partners in the NHS to make it available for those who are eligible.

This Assembly further notes that NHS Trusts in London may require additional resources and support to participate effectively in this programme.

This Assembly therefore calls on the Mayor to liaise with NHS England, the Department of Health and Social Care, and London’s NHS Trusts to ensure that adequate resources and guidance are put in place so eligible patients in the capital can benefit from timely access to givinostat."

Following debate, and upon being put to a vote, this motion was agreed unanimously.