Medication for IPF: Went to see my... - Lung Conditions C...

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Medication for IPF

Looseloafers profile image
5 Replies

Went to see my consultant yesterday! Waffle waffle can’t really help you! Will ask again about you having Nintedanib or the other medication for IPF! Why can’t I have it ? I suspect my age 76 or money! Too expensive I have paid all my subs so don’t see the problem 😡😡🤬🤬

5 Replies

The access criteria for nintedanib via NHS England are currently:

Nintedanib for treating idiopathic pulmonary fibrosis (January 2016)


Nintedanib (Ofev®) is recommended as an option for treating idiopathic pulmonary fibrosis, only if:

the patient has a forced vital capacity (FVC) between 50% and 80% of predicted, the manufacturer provides nintedanib with the discount agreed in the patient access scheme, and, treatment is stopped if disease progresses (a confirmed decline in percent predicted FVC of 10% or more) in any 12‑month period.

Patients whose treatment was started within the NHS before this guidance was published should have the option to continue treatment until they and their NHS clinician consider it appropriate to stop.

If you meet those criteria, then there’s no clear reason to refuse unless cost at a local level is the motivating factor. It shouldn’t be under any circumstances, though, and is therefore irrelevant, but the list price is more than £2000 per month charged to the prescribing authority (before the confidential discount). Have you considered asking to be referred elsewhere, either permanently or just for a second opinion?

Sometimes the clinical guidelines set by NICE are incredibly stringent, and it is usually because of cost. In addition to her chest problems, the 12 year old I’m on here for has another condition for which there is a treatment available that has a 70% total remission rate after one year (following 6 months of treatment) but despite the fact she’s been suffering for almost 4 years, and every treatment we give her gradually loses effectiveness, she’s not currently eligible because of the NICE access guidelines. Given the cost and volume of meds she’s already had over the last 4 years, I’d argue she probably could have had a 6 month course of treatment paid for and potentially be in remission by now, but it’s not my call. Quite often, it’s not the clinician’s call either if they know that an application is probably going to fail.

Looseloafers profile image
Looseloafers in reply to

Thanks for your reply! I just bitterly resent the fact that there are folk out there that can’t have any treatment

in reply to Looseloafers

Absolutely agree with you, and I think you should be pushing for more from your consultant. Even if they can’t get you on nintedanib, they shouldn’t be just shrugging their shoulders.

Suzie42 profile image

You need to be referred to one of the major hospitals who deal with IPF. I'm under the Brompton in London, never been there but was put on Nintedanib. I was 79%....your age shouldn't come into it

jmsutt73 profile image

Age should not impact your Dr's decision. Push for an answer as to why he/she is not prescribing an anti-fibrotic. (There are two currently being prescribed for IPF.) If they mention age, get another Dr... I was prescribed at your exact same age. J

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