Time is muscle: an update on our fast moving campaign
Today our co-founder Alex and her son Jack met the Culture Secretary, Lisa Nandy MP, to discuss the Early Access Programme (EAP). Alex and Jack asked her to raise this issue with her cabinet colleagues, and of course the Secretary of State for Health and Social Care, Wes Streeting MP!
And lots of you are engaging with your MPs! Thank you to the hundreds of you who have contacted your consultant, your hospital Trust, the Medicines and Healthcare products Regulatory Agency (MHRA), or your GP, about givinostat.
An incredible 150 of you have written to the MHRA – which is currently reviewing givinostat. These are incredible numbers for a rare disease, and we know that decision makers are taking notice. Our ask to them is to give the drug a broad label.
Givinostat webinar
Our ask of you this week is simple; Please save the date and register for our webinar on givinostat at 7pm on Thursday 19 December. Alex Johnson will be joined by clinicians from the expert North Star clinical network, who will give an update on the latest news about givinostat. We’ll also discuss our work lobbying for givinostat, and what our plans for the New Year are. If you’d like to come along, register here.
If you haven’t done so already, here are our three top suggestions for taking action!
1. Write to your local NHS Trust
The Trust is responsible for resourcing locally, and if your neuromuscular consultant doesn’t think they can deliver the EAP due to staffing, or administration, or something similar – then the Trust is the organisation that can fix it. Find a template to send to the Chief Executive of your Trust here, with some information on how to find the best contact details, here.
2. Write to the MHRA
The MHRA, Britain’s medicines regulator, is currently deciding whether to give givinostat a licence. If they do, we want it to emulate the broad licence already granted by the Food and Drug Administration in the US – where givinostat is available to everyone with Duchenne muscular dystrophy aged six-years and over (both ambulant and non-ambulant boys). Find a template to send to the Chief Executive of the MHRA, along with contact details, here.
3. Write to your MP
Time is muscle. Email your MP and ask them to write to the Department for Health and Social Care on your behalf to request that your neuromuscular clinic has the support they need to grant timely access to givinostat to everyone who could benefit. Find a template to send to your local MP, plus how to find their email address, here.