The latest on our fast moving and passionate campaign for access to givinostat
The Duchenne community is really pulling together to make givinostat available! You have been writing to your NHS Trusts, the Medicines and Healthcare products Regulatory Agency (MHRA), and MPs, and the momentum is really growing.
Here are two examples of where people are going above and beyond.
If you want to help out too, keep on reading: there’s actions everyone can take!
Earlier this week, Alex Clarke was on BBC Radio Oxford talking about the Early Access Programme (EAP) and explaining why it is important. You can listen to him here (1:52:08) or read it on the BBC website here.
As Alex says: Time is Muscle. We can’t patiently wait for givinostat to become available, and we need to get out there and persuade every part of the NHS to take part in the EAP and give access to everyone who could benefit.
At the end of November we told you the news that Jill and Richard Binns had persuaded their MP to submit a written question to the Department of Health and Social Care (DHSC). It’s finally been answered! You can read the question, and the answer, here.
In their answer, the Government does not promise any action on making the EAP available, and says participation is the decision of the local NHS Trust. But we know there are Trusts that would like to take part, but cannot because they do not have the resources. The Government can fix that!
What you can do: Ask your MP to apply for an oral question
As well as written questions, MPs can ask questions in the House of Commons. The next session for health questions is Tuesday 7 January, and the deadline for MPs to enter the lottery to ask a question is Thursday 19 December. Write to your MP and ask them to submit an oral question for the Health Question Time before the deadline. Find a template letter, and some suggested questions, here.
Sign up to the givinostat webinar
On Thursday 19 December at 7pm, we are hosting a webinar on givinostat and the EAP, along with clinicians from the North Star network, to share the latest news on access to this treatment. Click here to sign up.
Update on Duchenne UK and Muscular Dystrophy UK’s letter to trust Chief Executives
Last month, on 19 November, we wrote to 24 Chief Executives of the NHS Trusts which have doctors who are part of the North Star clinical network. To date, we have not had a single response from a Chief Executive nor their offices.
This is very disappointing – we believe in patients working in partnership with the NHS and doctors. They bring the medical knowledge, and we bring the first-hand experience of the disease. There are so many problems we can only solve together.
In 2025, we will be investigating why the Trusts did not respond to our early attempt to start a conversation on givinostat, and what can be done to remedy this.
And as always, a little reminder of what else you can do. We have been urging everyone to write to their local NHS Trust’s Chief Executive to ask them to make sure your neuromuscular clinic can take part in the EAP, to write to the MHRA to grant a broad label to givinostat, and to write to your MP to ask them to make appeals to the Department of Health and Social Care on your behalf. Find templates for all three below: