IPF: The Fight Continues

November 2021

Delighted as we are with the news that Nintedanib is now available for people with all forms of pulmonary fibrosis, the fight is not yet over.

We know that for people with idiopathic pulmonary fibrosis (IPF) who still have to wait until their lung function drops to 80% FVC before they can access the drug is unacceptable.

Robert with IPF says:

To prescribe anti-fibrotic treatments to all but IPF patients is discriminatory. IPF is the most common form of pulmonary fibrosis and the most aggressive. It makes no sense to me for NICE to now differentiate between IPF and NON IPF patients.

That’s why at APF we have not stopped championing the issues that affect over 35,000 people across the UK.  With a letter signed by patients and 7 MP’s being sent to NICE this November 2021, we continue to raise awareness of the devastating impact of being diagnosed with IPF, and to have life prolonging drugs withheld.  

Many patients, who are financially able, are turning to purchasing the drug from abroad.

Bob with IPF and an FVC over 80% says:

"This makes no sense to me.  Why wait for us [patients with IPF] to deteriorate before treating them? Surely this adds a further burden on to the NHS with potentially more hospitalisations and a drain on limited resources. Would a cancer patient be expected to deteriorate before they were eligible for life prolonging drugs?

I don’t hear of cancer or HIV patients being told to purchase their own medication until their diseases have worsened to a point of them being offered medication like this.”

With patients, clinicians and MP’s from across the UK we continue to raise awareness of the injustice that exists for people living with and dying from IPF every day.

Want to take action?

If you’d like join others by writing to your MP about the injustice of living with IPF and not being able to access an antifibrotic drug on diagnosis, you can search your MP details here. Include your address and contact details.  Write about your experience of living with IPF and inability to access anti-fibrotic treatment from diagnosis.  Ask your MP to write to Gill Leng, CEO at NICE and ask for NICE to drop the 80/50 rule for people with IPF.

If you require more support please get in touch.