Patients as empowered partners?Experience about the Expo at the European Cancer Congress 2013. Summary provided by Jan Geissler on 20 January 2014

1. Patients as empowered partners?
Experience about the Expo at the
European Cancer Congress 2013
January 2014
Jan Geissler
Co-founder, Leukemia Patient Advocates Foundation & CML Advocates Network
jan@cmladvocates.net

2. 2
European Cancer Congress –
“the” EU cancer meeting
• Over 800 speakers, 1000 presentations,
300 sessions, 18.000 participants
• 18% increase in patient advocates (vs. 2011)
• A two-day patient advocacy track, defined
and hosted by the “ECCO Patient Advisory
Committee”

3. 3
Patient advocates were not allowed to access the exhibition
area at the European Cancer Congress, Sept 2013
Amsterdam, The Netherlands
Protest letter signed by
patient advocates at ECC
2013

4. 4
A cascade of policies to protect patients and the
lay public… banned us from the ECC expo in NL
• EU pharmaceutical legislation 2001/83/EC, 2004/27/EC
“information to the general public on medicinal products” and
“measures to promote patient access to information on medicines”
(ITP = “Information to Patients” directives)
EU directive
EU Directive
into
NL law
Local
inter-
pretation,
inspectors
Review of „ITP regulation“ still a lame duck,
Review of Directive shelved since 2010, opposed by
23 Member States, to be addressed on EU & national level

5. 5
Our learning from ECC 2013…
We need to tackle this problem on all levels:
1. Change the system:
Bring the anachronistic “Information to Patients Directive” back on the EU
agenda ( ECPC etc.), towards a new
balance of information access in the „Google era‟
2. Until this is done,
avoid conflicts in current legislation:
• Conference organizers: Discuss with local
authorities early (e.g. ESMO 2014 Madrid!)
• Pharma companies: Reconsider what you
plan to present at your booths, and how you
wish to physically design your booths to enable
patient advocates to access the exhibition.
• Patient organisations: keep the pressure on
so this unacceptable situation doesn‟t ever happen again!
“2013 Headquarters Magazine”

6. 6
United
but unique!
Jan Geissler
jan@cmladvocates.net
Twitter @jangeissler