IPF-Charter History
Summary
IPF (Idiopathic Pulmonary Fibrosis) is a terminal diagnosis with a remaining life expectancy of up to 5 years in the 2010s , depending on early or late diagnosis.
The scene changed with the european market approval of the first two antifibrotic drugs in 2011 and 2015.
In 2011, Pirfenidone, a small molecule from InterMune, became approved for the treatment of IPF via the European centralized procedure.
InterMune, then also Roche (which took over InterMune), started bringing together patient organizations and medical specialists to create an IPF Patient Charter
and an European Patient Organisation.
After Boehringer Ingelheim (BI) entered the market 2015 with Nintedanib, Roche's activities began to fade away.
Before EU-IPFF existed
I personally entered the IPF scene as founding member of the Lungenfibrose Forum Austria (LFF) in 2015. Günther Wanke, head and soul of this organization and operator of the LFF website, changed the original intended name targeting IPF to a more common phrase to include potentially also sarcoidosis patients like me.
The IPF Charter was compiled during some meetings of patient representatives, medical specialists (e.g. Francesco), pharma representatives and agency staff.
Most of these meetings were held in Brussels, organized by agency Weber Shandwick. Also the founding of EU-IPFF was held in Brussels:
EU-IPFF Verband gegründet (2024-02-21)
Liam became the secretary of EU-IPFF and is really the first hand source for all details.
After founding of EU-IPFF
At the rare disese day 2014 this explaining press release could be found in Austria:
InterMune® gibt die Unterstützung der ersten Europäische Patienten- Charta für idiopathische pulmonale Fibrose (IPF) bekannt (2014-02-28).
There have been some further meetings to detail the charter, teach and motivate the participants and to plan further activities including a presentation in the EU parliament:
Die europäische IPF Patienten Charta
EU-IPFF 2. Generalversammlung - EU Parlament
The webpage of the charter "ipfcharter.org" doesn't exist since some years. But old snapshots can be reviewed in the webarchive: WebArchive IPFCharter.org (Aug. 2015).
Being only a proxy for IPF activities, I participated only in a few meetings, for instance in the
3rd EU-IPFF Workshop in Brussels (Nov 2016).
The workshop was very inspiring and maybe shaped my future as patient representative.
Materials:
EU-IPFF Day 1,
EU-IPFF Day 2,
Report and Outcomes.
The supporting agency was Burson-Marsteller.
The IPF Charter - what were the motivations?
While InterMune got market approval of Pirfenidone in 2011 for whole Europe, the reimbursement approval in the individual national states run rather slow.
ChatGPT made some nice summaries on the Charter and on drug availability:
ChatGPT on IPF Charter
ChatGPT on Approval and Availability
Maybe we can learn from the history of the IPF-Charter, from motivations and stakeholders, for our activities.
Btw., here is a foto of the original IPF Charter on paper:
IPF Charter signed
The last German version of the IPF Charter distributed as PDF I could find is here:
EU IPF Charta (LOT).
More insights on Charter and environment can be found in the annual reports of the LFF:
LFF Annual Reports