Make Givinostat available to patients with Duchenne muscular dystrophy
The Givinostat Early Access Programme is for patients with Duchenne muscular dystrophy.
The London Assembly believes it should be made available to everyone who is eligible and could benefit from the treatment.
Today, the Assembly called 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.
James Small-Edwards AM, who proposed the motion, said:
“Everyone living with Duchenne muscular dystrophy deserves timely access to the most promising treatments available.
“The Givinostat Early Access Programme offers real hope for Duchenne families but it’s currently a postcode lottery.
“We’re calling on the Mayor and NHS partners to make sure ambulant and non-ambulant patients in London are not left behind.”
The full text of the motion is:
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.
The meeting can be viewed via webcast or YouTube.
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Notes to editors
- The motion was agreed by unanimously.
- James Small-Edwards AM, who proposed the motion, is available for interview.
- As well as investigating issues that matter to Londoners, the London Assembly acts as a check and a balance on the Mayor.
For more information, please contact Alison Bell in the Assembly Media Office on 07887 832 918 / [email protected]. For out of hours media enquiries please call 020 7983 4000 and ask for the Assembly duty press officer.