How you can support our appeal to NICE and to Unlock DaraCyBorD for patients in England and Wales.

DaraCyBorD is the first bespoke drug for the treatment of AL amyloidosis, but it has been rejected by NICE for use in the NHS in England and Wales. We think this is unacceptable, and Myeloma UK will do everything we can to fight this decision, but we need your help.

This decision by NICE means that newly diagnosed AL amyloidosis patients in England and Wales are being denied the option to receive a treatment that dramatically improves remission times. A treatment that is already available in Scotland. We are calling on politicians to back our appeal to NICE and to Unlock DaraCyBorD for patients in England and Wales.

How you can help

Contact your MP

It’s your MP’s job to represent you in Parliament. Ask them to raise this issue in parliament and ask them to write to the Secretary of State for Health and Social Care – Steve Barclay and to the Chief Executive of NICE. We’ve drafted a template letter which has the basic information, but it’s more powerful if you add in your own story (you can send a letter even if you don’t have AL amyloidosis and you just want to support the campaign).

You can find out who your MP is by visiting www.theyworkforyou.com and typing in your postcode.

Most MPs are on social media so you can contact them and ask them to support our campaign.

You can also request to meet with your MP to talk about the issue.

If you need support with any of this then please contact our Head of Campaigns, Janis McCulloch. Please also let us know if you do contact your MP and what their response is by emailing Comms@myeloma.org.uk

Share your story

We know this decision will have a huge impact on our community. Your stories will help us share that impact with the press and decision makers. Nothing is more powerful than your voice. You can fill in our Tell Your Story form and a member of the team will get in touch.

We know that this decision will be upsetting for many people, the Myeloma UK team is here for you, so don’t hesitate to contact our free Infoline on 0800 980 3332 (UK) or 1800 937 773 (Ireland).

Alternatively email our Ask the Nurse service at askthenurse@myeloma.org.uk for emotional support, a listening ear and practical advice.

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