Are you interested in using your lived experience and voice to help us shape the future pulmonary fibrosis research?
Together, we can make improvements that affect thousands of people living with pulmonary fibrosis to live well for longer.
- People with pulmonary fibrosis linked to a known cause have access to one anti-fibrotic treatment, but another one is also available. We believe choice and cost effectiveness matters – we want people with pulmonary fibrosis linked to a known cause to have a choice of treatments from diagnosis. That’s why we are working with NRAS, SRUK and PFT to ensure policy makers know that choice matters
- People with idiopathic pulmonary fibrosis have to wait until their lung function drops to 80% or below before they can be prescribed life pro-longing treatments. This is wrong. We are working with decision makers to ensure they understand the full impact of this rule on our community and urgently remove this restriction.
- As COVID-19 cases increase and we head towards winter, we want people with pulmonary fibrosis and their loved ones to have early access to booster vaccinations and treatments if they get COVID-19. We are working with decision makers to highlight the high risk to serious illness if they have COVID-19 and are explicitly included in priority vaccination and/or treatment groups
- In October 2021 we successfully led the campaign for Nintedanib, an anti-fibrotic treatment that slows lung scarring, to be prescribed for people with non-IPF from diagnosis. This drug is now available to around 15,000 extra people across England, Wales and NI. Read more here
- At the start of the pandemic in 2020, people with pulmonary fibrosis were not included as part of the Clinically Extremely Vulnerable list, enabling people to have access to extra support. With Dr Lisa Spencer people with pulmonary fibrosis were successfully added to this list. This was a game changer for families, who needed to shield at the height of the pandemic and before vaccinations were available
Coalitions we belong to that makes our voice go further
- All Party Parliamentary Group on Vulnerable Groups to Pandemics
- Association of Medical Research Charities Policy and Public Affairs Working Group
- Association of the British Pharmaceutical Industry (ABPI) Patient Organisation Forum
- National Voices
- NHS Blood and Transplant (NHSBT) Cardiothoracic Patient Group
- Taskforce for lung health