Why support our campaign to end restrictions on life extending drugs this September?

We want every patient, family member, friend or health care professional to support our campaign and push access to life extending anti-fibrotic drugs so they are available to everyone.

Why now?

  • 70,000 people currently live with some form of lung fibrosis but researchers warn there could be a potential surge in cases as lung scarring is occurring in people who have been infected by Coronavirus
  • The UK is the only country in Europe and North America with this rule.  It is especially distressing as the current life expectancy for patients is just 3 to 5 years following diagnosis
  • You wouldn’t expect a cancer patient to wait for effective treatment until their cancer worsens. Pulmonary fibrosis has a worse prognosis than many cancers.  

What are the drugs available?

  • There are two anti-fibrotic drugs – Pirfenidone and Nintedanib – that can halt the spread of the disease in many patients.However, these drugs are only available to people with a specific type of lung scarring disease; idiopathic pulmonary fibrosis (IPF).
  • Everyone who is currently entitled to access are denied these drugs until their disease worsens.  Under NHS guidelines, diagnosed IPF patients have to wait for these medicines until their lung function declines to 80%. Both restrictions on access to these drugs is unacceptable.
What can you do?

Write a letter to your local MP asking them to support universal access to Pirfenidone and Nintedanib.

How to find your local MP

Type in your postcode to find the contact details of your local MP.  You can email or post your letters.  Handwritten and posted is also absolutely fine too 

Sign up to receive your template letter

Once you have signed up we will send you a draft template to send your own letter to your MP.  Whatever you do, make it personal.

Our biggest advice is to make it personal.  

You may be a patient, family member, friend or bereaved partner.  Your perspective counts!

What to do once you’ve sent your letter

Once you’ve emailed or posted your letter let us know!  

You can tweet us on @actionpfcharity share on facebook or email us on info@actionpf.org and also share your letters of response from your MP – the more you share on social media the more likely we’ll bring about the change we must see.