Why I am campaigning to expand treatment options for Pulmonary Fibrosis patients
For a while now, I've been engaging with Action for Pulmonary Fibrosis, a fantastic organization that supports those affected by this cruel disease, and campaigns to raise awareness, educate the public and seek a cure.
On behalf of constituents and following a meeting with them and ActionPF, I wrote to the Institute for Health and Care Excellence seeking to avoid further delays on work towards NICE appraisal for Nintedanib and Pirfenidone, two treatments already available for some Pulmonary Fibrosis sufferers but not those with Idiopathic Pulmonary Fibrosis.
I want to pay tribute to the amazing work being done every day by Action PF, a fantastic organization that supports those affected by this cruel disease, and campaigns to raise awareness, educate the public, and seek a cure. I am sure they will be keeping the pressure on and I am proud to be standing with them.
What is Pulmonary Fibrosis?
Pulmonary Fibrosis is a terminal lung condition with a prognosis poorer than almost all cancers - there are 70,000 sufferers in the UK and several in this constituency. South Cambridgeshire is uniquely involved in the fight against this condition, including work being done at the Royal Papworth Hospital and the new Heart and Lung Research Institute on the Biomedical Campus.
So far, I have
- Met with constituents to discuss Nintedanib and Pirfenidone, two treatments already available for some Pulmonary Fibrosis sufferers but not others.
- Met with Action PF to discuss their campaigns to ensure longer, better quality lives for thousands of patients in the UK.
- Browne wrote to the National Institute for Health and Care Excellence seeking to avoid further delays in approving the drugs mentioned above.
- Lobbied Health Ministers and discussed the issue within Parliament.
Campaign success
NICE have listened and moved quicker in starting their appraisal of Nintedanib and Pirfenidone, something I welcome. It is unjust to restrict the use of antifibrotic medicines, which have been show to extend lives, and I urge NICE to understand the experience of patients who need this treatment as they undertake the next phase of their work.