"Addressing the unequal nature of cancer: patient rights take centre stage", presented at the European Parliament by Jan Geissler, patient advocate and cancer survivor, on World Cancer Day on 4 Feb 2014 in the European Parliament in Strasbourg

1. Addressing the
unequal nature of cancer:
patient rights take
centre stage
4 Feb 2014, European Parliament
Jan Geissler
Director European Patients’ Academy (EUPATI)
Founder, CML Advocates Network / LeukaNET / Leukemia Patient Advocates Found.

2. Cancer has many faces.
1 in 3 Europeans will get cancer.
1 in 4 Europeans will die from it.

3. “The magic bullet”?
We need faster, better, more
effective research and progress.
TIME Magazine 28 May 2001
EUROCARE-5 (Angelis et al, Lancet 2013)

4. More rare means more alone.
There are about 200 different cancers.
Source: RareCare (2012)
17 common
cancers
186 rare cancers

5. Not at best age?
The rarer, the older, the worse.
RareCare (Gatta et al, 2012)

6. European reality.
Strong inequalities across regions.

7. A long way to go for better outcomes:
Much is at stake. Patients need to be at the center.

8. Example „Information to Patients” Directive
2001/83/EC, 2004/27/EC
European Cancer Congress, Sept 2013
Amsterdam, The Netherlands
Amsterdam, The Netherlands

9. “Patients’ Rights in Cross-Border Healthcare” Directive:
Major step forward to strengthen EU patients’ rights.





First time in EU law that patients have a right to cross-border
healthcare
Right to information, and creation of National Contact Points
Rights to a medical record
More transparency of quality and safety standards
Better cooperation between Member States in rare diseases,
in ERNs and CoEs.

10. European Cancer Patients’ Bill of Rights:
Patients at the center of all decision making

The right to access all relevant information,
in a language that patients understand.

Patient as a partner in any
decision making on personal health,
in health policy and health research.

Optimal and timely access to best quality cancer care,
underpinned by research and evidence,
to ensure optimal cancer outcomes.

The right to have patients' advocacy organizations
involved in all aspects of cancer care,
empowering patients as equal partners.

11. It’s all about
doing something meaningful.
Support the

12. Nothing
Nothing
about us
about us
without us.
without us.
Jan Geissler
Jan Geissler
jan@cmladvocates.net
jan@cmladvocates.net
Twitter @jangeissler
Twitter @jangeissler