MSPs meet in Scotland
On 23 May, 16 MSPs including the meeting chair, Jackie Baillie, met at Holyrood to discuss access to precision medicines for people with cystic fibrosis.
The cross-party meeting was also attended by Trust Chief Executive David Ramsden, community representative Kelli Gallacher and Dr Gordon McGregor, who is a consultant at Glasgow adult CF centre. The group has requested a meeting with Minister for Health and Sport Shona Robison to discuss the issue further.
Following the meeting Alex Neil, a former Health Minister, spoke at First Minister's Questions earlier this week, asking about access to Orkambi in Scotland, which can be viewed here.
The Trust is concerned that the First Minister’s response suggested a return to a postcode lottery of access to medicines, whereby individual patients would need to apply for access to new medicines on a case-by-case basis. The Trust will continue to campaign for equitable access to Orkambi for all who are eligible.
The First Minister also confirmed that a meeting between NHS Scotland and drug manufacturer Vertex to discuss access to Orkambi will take place in the coming weeks.
Today a motion for a debate calling for access to Orkambi has been tabled by Maurice Corry MSP. If successful it will be held in mid-June. Further details will follow shortly about contacting your MSP to request they attend and speak at the debate on your behalf.
Negotiations continue in England
Vertex met with NHS England on 25 May, after which the manufacturer released the following statement:
“We can confirm that NHS England and Vertex had a meeting on Friday 25th May. Both parties recognise there is still some way to go to reach an agreement on how our innovative medicines should be valued. Vertex continues to share the cystic fibrosis community’s sense of urgency and the parties have agreed to meet again in the coming weeks.”
We understand that the next meeting is scheduled for 12 June.
Wales discusses a debate
A petition to the Welsh Assembly earlier this year called for a debate around access to Orkambi for those with CF in Wales.
The petitions committee met on 15 May to discuss the application and have requested an evidence session with Vertex and the Cabinet Secretary for Health in Wales. This is likely to take place in July and we will update once we know more.
Northern Ireland protesting
In Northern Ireland a community-led protest will take place on 22 June as one of many community activities taking place on the Trust’s Wear Yellow Day. This will be alongside a community protest in London. Get further information here.