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

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

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

  1. 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. 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. 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. 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. 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. 6 United but unique! Jan Geissler jan@cmladvocates.net Twitter @jangeissler

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