Early Access Programme for Givinostat

We’ve been talking about Givinostat for some time now especially at our events.
This is a new drug that Alex has been on for the past 5 years, that is proving to be delaying disease progression.
It’s currently going through the NICE approval process, but as with these things it’s a slow process – all while families are desperately waiting to get this drug for their child.
News has come in – a major development for some families (unfortunately not all at this stage), that the treatment will become available free of charge in the UK until the regulators make a decision about approval.
To all families affected by Duchenne – please read this information from Duchenne UK carefully as you will need to take action to get your child onto Givinostat.

This makes us feel incredibly proud of Alex for taking part in this trial, we know he was one of the lucky ones to receive it – and for that we will be forever grateful. He may have come off his feet this year, but to have reached to 18 years old and still walking was nothing short of a miracle. He’s still taking this trial drug, as it’s not just about delaying going into a wheelchair, it is about prolonging muscle function overall.
We hope many more boys gain access now, and we really hope all boys and young adults living with Duchenne are granted access to it very soon.

This is a big step in the right direction.

Posted in Drug approval process, Research News