Trust urges new Health Secretary to join precision medicine fight
Earlier this week, David Ramsden, Chief Executive of the Cystic Fibrosis Trust, welcomed Matt Hancock MP to his new position as Secretary of State for Health and Social Care and wished him the best in his role “at a time of profound challenge and opportunity” for the services he will be leading.
David Ramsden also drew the Secretary of State’s attention to the issue of access to precision medicines for people with cystic fibrosis (CF), introducing him to the CF community’s two-year fight to engage the NHS and Vertex in constructive talks. He finished by asking to meet with the Secretary of State and supportive MPs to discuss how negotiations can continue and a deal can be reached.
You can read the letter here.
The Trust has also written to Scotland’s new Cabinet Secretary for Health and Sport Jeane Freeman MSP calling for an urgent meeting. View the letter here.
Meanwhile, ahead of the Parliamentary recess, find out how you can ask your MP to attend an adjournment debate on Tuesday 17 July in the House of Commons.
Orkambi adjournment debate secured in Parliament
Next Tuesday, 17 July, an adjournment debate will be held in the House of Commons on the issue of access to Orkambi for people with cystic fibrosis. Please contact your MP to ask them to attend the debate and represent you. But first, what is an adjournment debate?
What is an adjournment debate?
Adjournment debates are half an hour long, and take place at the end of each day’s sitting in the House of Commons. They are an opportunity for a backbench MP to raise an issue and receive a response from the relevant Minister.
Why is this happening so quickly?
MPs apply for an adjournment debate on a Wednesday to take place between the following Tuesday and the Monday after that. The debates are chosen by ballot, except for the Thursday debate which is chosen by the Speaker.
What will happen at the debate?
At the end of the day’s main business the Speaker will call a Government whip to move the motion 'That this House do now adjourn'. The MP who has been allocated the debate will then be called to speak and the Minister will be given time to reply. The MP who initiated the debate will not have the opportunity to speak again after the Minister has concluded. Other MPs may attend and make interventions if they are accepted.