Are you interested in using your lived experience and voice to help us shape the future pulmonary fibrosis research?
Action for Pulmonary Fibrosis (APF) spearheaded a campaign for patients in Scotland. Our detailed submissions to NICE and SMC were based on what we learnt from patients and their families along with input from one of our clinical trustees – Dr Simon Hart from Hull York Medical School. Throughout the process we maintained close contact with patients, ILD Specialist doctors and other stakeholders.
Steve Jones, Chair of Trustees, Action for Pulmonary Fibrosis and patient representative advising the NICE and SMC committees carrying out the appraisals, says:
“We are delighted with today’s SMC decision, which offers real hope to people in Scotland living with pulmonary fibrosis who for so long have felt powerless with the huge physical and emotional burden of living with this debilitating disease, and while it steadily worsens. It is encouraging that they will now have a treatment that can slow its progress.”
The news has been long awaited for by patients across Scotland. Bill Drummond, 80, a retired electrical engineer from Grangemouth, who has pulmonary fibrosis associated with rheumatoid arthritis, says:
“This is wonderful news. I was diagnosed with pulmonary fibrosis 18 months ago but there was no treatment my doctors could give me. Nintedanib has been shown to slow progress of the disease and will give hope to the hundreds of people in Scotland, like me, living with this devastating condition”.
Some patients living with the most common type of the disease, idiopathic pulmonary fibrosis (IPF), can already access the drug but this is the first time the drug is being made available to the estimated 1,500 patients in Scotland living with other forms of the disease, such as:
· hypersensitivity pneumonitis (disease like farmer’s lung and bid keepers’ disease)
· occupational diseases such as asbestosis and silicosis.
Is this subject to the 80/50 rule?
No, the 80/50 rule will not apply.
When will it be available to patients?
New drugs are generally made available by NHS Scotland three months after approval by Scottish Medicines Consortium (SMC).
How many patients will now be eligible in Scotland to get this?
APF estimates that about 1,500 people in Scotland live with a type of progressive pulmonary fibrosis (other than IPF).
Who can prescribe it? Will patients need to be referred to a specialist centre?
In Scotland, all respiratory consultants will be able to prescribe the drug subject to prescribing guidelines.
If I live in England, can I register to get it in Scotland?
We understand that the drug will only be available to patients who live in Scotland and are registered with NHS Scotland. NICE is currently appraising nintedanib for progressive pulmonary fibrosis (except IPF) in England and will give its decision in September 2021.
Will Wales and NI follow NICE? What will be the timescale be?
NICE ‘s decision will be announced in September 2021. Wales and Northern Ireland are expected to follow NICE advice.
Did NHS Scotland negotiate a better cost?
We understand that NHS Scotland negotiated a discount on the list price (approx. £26,000 per patient per year), but such information is confidential.
What are our next steps in Scotland?
APF will monitor implementation of the new decision in partnership with leading ILD specialist doctors in Scotland.
APF has recently been approved by OSCR as a charity in Scotland and will be expanding activities in the country to benefit all pulmonary fibrosis patients and their families. Our programme will be managed by a national coordinator based in Scotland.