Presentation on how the patient voice can turn health policy into advocacy opportunities to improve the life of patients. Presented by Jan Geissler, Co-founder of CML Advocates Network, at the Patient Seminar of the European Society of Gynaecological Oncology (ESGO) in Liverpool on 19 Sept 2013

1. ESGO Patient Seminar 2013
The patient voice: turning
health policy into opportunity
Jan Geissler
Director, European Patients„ Academy on Therapeutic Innovation (EUPATI)
Co-founder Leukämie-Online e.V., CML Advocates Network, Leukemia Patient Advocates Foundation
Member of EU Committee of Experts on Rare Diseases (EUCERD)
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2. Patients are excited about progress in tackling
cancer, but this also brings new challenges
• Molecular targets/pathways
• Genome sequencing
• Translational research
• Personalized medicine
New approaches
needed
• HTA, QoL, endpoints, comparators
• Healthcare budgets vs drug pricing
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Drug
 Drug+Biomarker

New trial design
and recruitment

New collaboration
models

• Small trial populations
• Biomarkers

New priorities
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3. Patient advocacy groups have a key role to play
in patient support, advocacy and research
Support & inform patients
• Support the individual
• Find the right doctor (rare cancers!)
• Provide patient information
Advocate
• for better access to treatment
• for better/patient-centric regulation and laws
• for public attention
Enhance Research
• Collaborate internationally with clinicians & industry
• Help defining research priorities
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4. Why does the EU matter,
and why should we
collaborate?
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5. European Cancer Congress, 28 Sept 2013
Amsterdam, The Netherlands
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6. 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”
EU directive
EU Directive
into
NL law
Local
interpretation,
inspectors
• EU law affects us on the local level
• Law of 2001-05 vs. the “Internet era” and “patient at the center” of 2013
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7. „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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8. “Clinical Trials Directive”
2001/83/EC & 2004/27/EC
Directives introduced to protect us, the patient.
Has improved transparency, safety, data quality…
…but has it met our needs?
• Has hindered cancer research in Europe, multiplied
administrative burden, skyrocketed trial costs,
threatened mainly non-commercial "investigator-initiated
trials“
• The safest trial is the one that does not happen!
• Currently being reviewed as “EU Regulation”.
It must go right this time: European patient
umbrella groups are fully alert and involved.
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9. Influencing health policy:
Finding allies in Parliaments
• MEPs Against Cancer (MAC)
• Initiated in 2006 by ECPC
• 7 workshops on Screening & Inequalities
• >70 MEPs,
• Forum Against Cancer Europe (FACE)
• “FACE” relaunch in 2010 by ECPC
• Connected MEPs, but also Commission and Council
• Series of workshops and campaigns in the EP,
promoting action against cancer
• >80 MEPs
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10. So where„s the opportunity
for patients?
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11. About 200 cancers are rare – but make up 25%
of new cancer cases. Common challenges:
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1. Prevention and screening
not as realistic
2. Late or incorrect diagnosis
very common
3. Experienced doctor not available locally,
access to clinical expertise difficult
4. Lack of appropriate therapies
5. Slowness of research (lack of trials
& commercial interest),
6. Facing stigma and inequity
7. Lack of information & local patient groups

12. Together we can turn health policy into
opportunities for patient organisations
• Research policy and public research:
Engage through EU action programmes, research projects,
tenders – and fund some of your work
• No policy about us without us:
Influence directives, regulations, laws
at the effective level
• No regulation about us without us:
The patient voice in competent authorities, agencies, HTA
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• No research about us without us:
Collaboration with research groups,
educated as partners

13. By collaborating across
diseases and borders,
we can turn health policy
into an opportunity.
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14. Thank you!
Jan Geißler
jan@patvocates.net
Twitter @jangeissler
www.patvocates.net
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