Addressing the
unequal nature of cancer:
patient rights take
centre stage
4 Feb 2014, European Parliament
Jan Geissler

Di...
Cancer has many faces.
1 in 3 Europeans will get cancer.
1 in 4 Europeans will die from it.
“The magic bullet”?
We need faster, better, more
effective research and progress.

TIME Magazine 28 May 2001

EUROCARE-5 (...
More rare means more alone.
There are about 200 different cancers.
Source: RareCare (2012)

17 common
cancers

186 rare ca...
Not at best age?
The rarer, the older, the worse.

RareCare (Gatta et al, 2012)
European reality.
Strong inequalities across regions.
A long way to go for better outcomes:
Much is at stake. Patients need to be at the center.
Example „Information to Patients” Directive
2001/83/EC, 2004/27/EC
European Cancer Congress, Sept 2013
Amsterdam, The Neth...
“Patients’ Rights in Cross-Border Healthcare” Directive:
Major step forward to strengthen EU patients’ rights.






...
European Cancer Patients’ Bill of Rights:
Patients at the center of all decision making


The right to access all relevan...
It’s all about

doing something meaningful.
Support the
Nothing
Nothing
about us
about us
without us.
without us.
Jan Geissler
Jan Geissler
jan@cmladvocates.net
jan@cmladvocates....
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Launch auf the European Cancer Patients Bill of Rights: Addressing the unequal nature of cancer: patient rights take centre stage

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"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

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Launch auf the European Cancer Patients Bill of Rights: Addressing the unequal nature of cancer: patient rights take centre stage

  1. 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. 2. Cancer has many faces. 1 in 3 Europeans will get cancer. 1 in 4 Europeans will die from it.
  3. 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. 4. More rare means more alone. There are about 200 different cancers. Source: RareCare (2012) 17 common cancers 186 rare cancers
  5. 5. Not at best age? The rarer, the older, the worse. RareCare (Gatta et al, 2012)
  6. 6. European reality. Strong inequalities across regions.
  7. 7. A long way to go for better outcomes: Much is at stake. Patients need to be at the center.
  8. 8. Example „Information to Patients” Directive 2001/83/EC, 2004/27/EC European Cancer Congress, Sept 2013 Amsterdam, The Netherlands Amsterdam, The Netherlands
  9. 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. 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. 11. It’s all about doing something meaningful. Support the
  12. 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

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