Your donation will make a difference:
Cystic Fibrosis Trust
Forum
  • Home
  • /
  • News
  • /
  • Parliament calls for your views in the access to medicines inquiry

Parliament calls for your views in the access to medicines inquiry

Find out how you can take part in the Health and Social Care Committee’s inquiry into the availability of Orkambi and other precision medicines on the NHS, and how your words could make a difference. *Submissions are now closed - this story was updated on 01/03/19*

The Committee have now stopped accepting evidence. To show your support for access to life-saving medicines for cystic fibrosis demonstrate with the Cystic Fibrosis Trust on 7 March, the day of the Inquiry. We are leading a public demonstration outside the Houses of Parliament to highlight this Inquiry as part of our ongoing campaign with the CF community to make Orkambi and other life-saving drugs available to people who could benefit from them. Tell us you’re coming here.

Parliament want to understand more about the availability of Orkambi and other cystic fibrosis (CF) medicines on the NHS. A group of MPs called the Health and Social Care Committee are running an inquiry, or investigation, to do this. We have written about this and why it is powerful on our website.

First, the committee requested technical documents from NHS England, Vertex, and the National Institute for Health and Care Excellence (NICE). Now, they’re looking for thoughts, experiences and views from normal people. They want to hear from as many people as possible with lots of different experiences.

How can you take part?

The committee calls this process ‘submitting evidence’, which sounds formal, but it doesn’t have to be. You could write a short paragraph explaining how CF has impacted your life in the last three years. What is the effect of waiting for new treatments? How would an MP feel if they stood in your shoes for a day? Do you feel normal people can understand how availability of medicines is decided? Have you felt involved in decisions about medicines? Do you feel the process of deciding medicines is fair? How has the lack of availability of the latest CF medicines changed your opinion of the NHS, the Government, and drugs companies?

You can write as much or as little as you want (the maximum is 3,000 words!). You can submit anonymously or confidentially (so only the committee can read your submission) if you’d like. The only requirement is that it’s written down. Anybody can submit evidence. It doesn’t matter if you’re directly or indirectly affected by cystic fibrosis. If you’re 10 or 100!

How can you submit your evidence?

You can submit your evidence online here (submissions now closed). We want to help as many people as possible to tell the committee their views and experiences. Often, it’s the small details that help people who may not know much about CF to understand.

If you need any help or would like more information, please email us at policy@cysticfibrosis.org.uk.

Related content

  • Access to medicines FAQs

    Drug appraisal, assessment and licensing  How are drugs appraised? How are drugs assessed for funding? How does drug appraisal work...

  • Community unites to call for #OrkambiNow!

    There was a fantastic turn-out at yesterday’s Orkambi protests, organised by the Cystic Fibrosis Trust, which took place at four locations across...

  • Act now for access in Scotland

    The Cystic Fibrosis Trust has launched a call to MSPs following the Scottish Medicines Consortium (SMC)’s decision to reject funding for the...

  • thumbnail

    NICE unable to recommend Orkambi on cost grounds

    As the National Institute for Health and Care Excellence (NICE) opts not to recommend the gene-specific medicine Orkambi to NHS England, while...