This page is to provide patients and families with information about the givinostat early access programme and accessing the medicine as a patient at Evelina London Children’s Hospital.
This week, we have sent letters and an information leaflet to all families of existing Evelina London patients who may be eligible for givinostat.
What is the givinostat early access programme?
Givinostat is a potential treatment for Duchenne muscular dystrophy (DMD) that has been developed by the pharmaceutical company ITF Pharma Limited.
This medicine had some positive results in clinical trials and is awaiting a decision from the National Institute of Heath and Care Excellence (NICE) as to whether it will be made available to patients on the NHS.
In the meantime, ITF Pharma Limited have made the decision to fund the medicine for eligible patients through an early access programme.
Givinostat early access programme at Evelina London Children’s Hospital
While the manufacturer has made the medicine available free of charge for this programme, there are significant extra costs to us to enable it to be given to patients safely.
It has taken us some time to make sure we can cover these costs, and have the staff in place to monitor the use of the medicine. We know this has been a difficult and worrying situation for patients and families, and we have been working quickly to resolve this.
We are pleased to confirm that Evelina London is participating in the givinostat early access programme. This means we have started to offer givinostat to eligible children with DMD in our clinic.
What is happening now?
We have carefully reviewed our patient list. This is so we can prioritise children who need the treatment most urgently, or are at a higher risk of losing movement (ambulation) soon.
We have started to see our most urgent patients and have started to prescribe givinostat this week.
Who is eligible?
Which patients will be offered givinostat?
The givinostat early access programme for givinostat is for ambulant patients only. This means children who can walk or at least stand.
Can patients from other hospitals be referred to Evelina London for treatment
We can only offer givinostat to current Evelina London patients. Unfortunately, we cannot accept referrals from other hospitals.
When will appointments take place?
We have started to see our most urgent patients and have started to prescribe givinostat this week.
We will contact the families of our other eligible patients before the end of this summer with details of their appointments.
Questions?
If your child is currently a patient at Evelina London and you have any questions, please email gstt.EvelinaNeuroCNS-SMB@nhs.net.
Read our patient information leaflet about the givinostat early access programme (PDF 249KB).