The Cystic Fibrosis Trust has launched a call to MSPs following the Scottish Medicines Consortium (SMC)’s decision to reject funding for the gene-specific medicines Orkambi (for people aged over 12) and Kalydeco (to be extended to those aged two to five).
While recognising the benefits of the two drugs, the SMC raised concerns last week about the cost and long-term impact.
The Trust is proposing a solution, where Orkambi would be funded using the Scottish New Medicines Fund (NMF), while monitoring its long-term impact through the UK Cystic Fibrosis Registry. The NMF already funds Kalydeco for people aged six years and above with specific genotypes, and the Trust is calling for this to be extended.
Ed Owen, Chief Executive of the Cystic Fibrosis Trust said: "People with cystic fibrosis in Scotland must not be denied Orkambi because of a battle between the NHS and Vertex over price and longer term impact.
“The New Medicines Fund is a credit to Scotland, providing a perfect opportunity to provide access to Orkambi and enable the UK Cystic Fibrosis Registry to gather much-needed data on its long term impact. Vertex, the NHS in Scotland and the New Medicines Fund must come together and make this happen.”
If you live in Scotland, your voice could make a difference.
Write to your MSP, and call on the Scottish Government to support this solution and give access to those who could benefit from these life-changing treatments.