Green MSP shows support to Skye woman in campaign for cystic fibrosis drugs

Twenty-three-year-old Hannah McDiarmid is campaigning for cystic fibrosis treatments to be made available on the NHS. Photo credit: Willie Urquhart

Highlands and Islands MSP, John Finnie has shown his support for a young woman from Skye, who lives with cystic fibrosis, and is campaigning for access to the latest treatments for the illness through the NHS.

In this week’s edition of the Free Press (Friday 14th December) we reported on the appeal of 23-year-old Hannah McDiarmid, who was diagnosed with cystic fibrosis when she was 17 weeks old. Hannah, who lives in Torvaig near Portree is campaigning so that those living with CF can access treatments such as Orkambi, a drug – which according to the Cystic Fibrosis Trust – can “slow decline in lung function – the main cause of death among people with cystic fibrosis – by 42 per cent.”

While Orkambi has been licensed for use in the UK, it is currently not available through the NHS as the Scottish Medicine Consortium – which provides advice to NHS Scotland about the value for patients of every newly released medicine – has deemed the submitting company, Vertex Pharmaceuticals’  justification of the treatment’s cost in relation to its health benefits “not sufficient.” Adding that the company did “not present a sufficiently robust clinical and economic analysis to gain acceptance by SMC.”

This week’s Free Press led with Hannah’s appeal for cystic fibrosis treatments such as Orkambi to be made available to those living with the condition through the NHS.

Speaking to the Free Press earlier this week, Hannah, who has previously undergone operations for polyps in her nose, suffered stomach problems and chronic fatigue, believed it would be “too late” for her before cystic fibrosis suffers were able to access Orkambi and other new treatments for CF through the NHS.

Following the publication of this week’s Free Press, Mr. Finnie shared Hannah’s appeal via his Twitter account and said he had written to the Cabinet Secretary for Health, Jeane Freeman to determine what progress the Scottish Government have made with its efforts to make “Orkambi, and other similar medicines available through the NHS.” The Scottish Green Party member also asked whether talks between Vertex Pharmaceuticals, the manufacturer of the drug, and procurement officials had reached a “conclusion” or were still “ongoing.”

John Finnie MSP retweeted the front page of the Free Press via his MSP Twitter account on Thursday (13th December)

Mr. Finnie along with Ross, Skye, and Lochaber MP, Ian Blackford, were praised by Hannah this week for their support in the Cystic Fibrosis Trust’s ‘Stopping the Clock’ campaign which seeks to “make life-changing precision medicines available to people with cystic fibrosis.”

She said: “John Finnie invited me down to parliament, he’s been really great. I went to see Ian Blackford in August and he was very supportive as well. It’s good that I have these people on board”.

Hannah works at Skye and Lochalsh Archive Centre in Portree and holds a BA Hons in Gaelic Language and Culture, which she achieved through Sabhal Mòr Ostaig UHI while managing cystic fibrosis. Commenting to the Free Press today (Friday 14th December) Mr. Finnie said meeting Hannah had helped him appreciate the challenges faced by people living with cystic fibrosis.

He said: “It was my pleasure to congratulate Hannah on being named UHI Higher Education Student of the Year 2017, and host Hannah and her mother as my guests in parliament. Since meeting Hannah I have become much more aware of the difficulties people who live with cystic fibrosis face on a daily basis. I am glad that I had the opportunity to relay her story to parliament during a debate in June.”

He added: “I fully acknowledge that there are various pressures on the NHS and procedures must be followed before commitments to providing specific drugs are made. However, it is clear that Orkambi could be transformative for those with cystic fibrosis and I have written to the Health Secretary seeking an update on the Scottish Government’s progress in this regard.”

In March, First Minister Nicola Sturgeon said she echoed the calls of the then cabinet secretary for health for Vertex to offer a fair price for the treatment and resubmit an application to the SMC as soon as possible “in order that those who could benefit from medicine get access to it.”

The Free Press contacted Vertex Pharmaceuticals for a comment on whether they would resubmit an application but the company has not responded.

The letter from John Finnie MSP to the Cabinet Secretary for Health Jeane Freeman .

Article by Adam Gordon