Patients as empowered partners?Experience about the Expo at the European Cancer Congress 2013

January 2014Jan Geissler

Co-founder, Leukemia Patient Advocates Foundation & CML Advocates Networkjan@cmladvocates.net

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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”

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Patient advocates were not allowed to access the exhibition area at the European Cancer Congress, Sept 2013Amsterdam, The Netherlands

Protest letter signed by patient advocates at ECC 2013

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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 directiveEU DirectiveintoNL 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

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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”

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United but unique!

Jan Geissler

jan@cmladvocates.netTwitter @jangeissler