Access to treatment,   care and clinical trials by   patients with rare cancers                             Jan Geissler  ...
Rare but not alone? The journey of(rare) cancer patients 1 in 3 Europeans will get cancer  in their lifetime 1/3 of them...
Cancer, rare cancers, rare diseases– is there a difference?   Rare Cancers: often lost between 17 common cancers    and 1...
Patients with rare cancersface specific challenges1.   Prevention and screening mostly irrelevant2.   Late or incorrect di...
Patients with rare cancersface specific challenges1.   Prevention and screening mostly irrelevant2.   Late or incorrect di...
Rare Cancers: best to be treated inan experienced center   Misdiagnoses common before diagnosed appropriately   Number o...
Special challengescrossing country borders   Currently, crossing country borders for health services is    challenging (E...
Patients with rare cancersface specific challenges1.   Prevention and screening mostly irrelevant2.   Late or incorrect di...
Unmet medical needs for mostpatients with rare cancers   “Success stories” available only to    small numbers of rare can...
Barrier:Public image of clinical trialsLack of public confidence in research                                              ...
Potential benefits of a clinical trial   Personal benefit:    • Some new therapies only available in trials    • Closer m...
Understanding risks of clinicaltrials   Uncertainty always brings risks, but    trials are strongly regulated & assessed...
Where to find trials?   Research networks„ websites   EU Clinical Trials Register    https://www.clinicaltrialsregister....
Patient organisations are‚navigators‘ for patients   Most „official“ information portals    fail on rare cancers:    Budg...
International Rare Cancer AdvocacyOrganisations (just to name some)   International Brain Tumour Alliance (IBTA) - http:/...
Patients – as co-researchers?   "More needs to be done: rare cancers will never be a    priority unless the patients make...
Patients have a complementaryexpertise that is invaluable to research   Patients experience is    complementary, not subs...
The Patients’ Academy:empowering patients on medical R&D   Launched Feb 2012, runs for 5 years,    29 consortium members,...
Rare Cancers:Rare, but not alone.               Jan Geissler                  jan@patientsacademy.eu                  Tw...
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Access to treatment, care and clinical trials by patients with rare cancers - Jan Geissler

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"Access to treatment, care and clinical trials by patients with rare cancers", presented by Jan Geissler (Twitter @jangeissler) at ESMO congress in Vienna, 30 Sept 2012

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Transcript of "Access to treatment, care and clinical trials by patients with rare cancers - Jan Geissler"

  1. 1. Access to treatment, care and clinical trials by patients with rare cancers Jan Geissler Co-founder, CML Advocates Network Vice President, Leukemia Patient Advocates Foundation Secretary, European Forum For Good Clinical Practice Member, EU Committee of Experts for Rare Diseases (EUCERD)Director, European Patients‟ Academy on Therapeutic Innovation (EUPATI)
  2. 2. Rare but not alone? The journey of(rare) cancer patients 1 in 3 Europeans will get cancer in their lifetime 1/3 of them develop a rare cancer ~261 cancers are rare - and very different
  3. 3. Cancer, rare cancers, rare diseases– is there a difference? Rare Cancers: often lost between 17 common cancers and 1000s of rare diseases Rare Cancers share many challenges with rare diseases ~186 RARE CANCERS 203 ~6000 Cancers Rare Diseases
  4. 4. Patients with rare cancersface specific challenges1. Prevention and screening mostly irrelevant2. Late or incorrect diagnosis very common3. Experienced doctor not available locally, lack of access to clinical expertise4. Lack of appropriate therapies5. Slowness of research (lack of trials & commercial interest),6. Facing stigma and inequity7. Lack of information & local patient groups
  5. 5. Patients with rare cancersface specific challenges1. Prevention and screening mostly irrelevant2. Late or incorrect diagnosis very common3. Experienced doctor not available locally, lack of access to clinical expertise4. Lack of appropriate therapies5. Slowness of research (lack of trials & commercial interest),6. Facing stigma and inequity7. Lack of information & local patient groups
  6. 6. Rare Cancers: best to be treated inan experienced center Misdiagnoses common before diagnosed appropriately Number of „cases“ in a center, conduct of studies: Indicator for up-to-date expertise and treatment outcome Study clinic (n= 56 pts) Non-study clinic (n= 68) Higher chance to 25% receive a better 52% 48% therapy in 75% study centers (irrespective of trial participation) Standard Inferior therapy Source: Standard therapy in ,FIGO I-IIA: Study- vs Non-Study clinic, German Quality program QIII 2001 AGO OVAR
  7. 7. Special challengescrossing country borders Currently, crossing country borders for health services is challenging (E112 form, prior authorization, unclear rules) „Patients‘ Rights in Cross-Border Healthcare“ Directive 2011/24/EU, in national law by Oct 2013 • To provide clarity and legal certainty on access to diagnosis & healthcare in other EU Member States, especially when condition requires particular expertise or resources (e.g. rare diseases) • National contact points • Rules for reimbursement • Procedural guarantees • Prior authorisation system & reasons to refuse & time limits • Cooperation between health systems
  8. 8. Patients with rare cancersface specific challenges1. Prevention and screening mostly irrelevant2. Late or incorrect diagnosis very common3. Experienced doctor not available locally, lack of access to clinical expertise4. Lack of appropriate therapies5. Slowness of research (lack of trials & commercial interest),6. Facing stigma and inequity7. Lack of information & local patient groups
  9. 9. Unmet medical needs for mostpatients with rare cancers “Success stories” available only to small numbers of rare cancers Patients in urgent need of therapeutic innovationSource: RareCare (2012)
  10. 10. Barrier:Public image of clinical trialsLack of public confidence in research ?leads to delayed / lack of trial recruitment delayed generation of meaningful clinical data slow progress or lack of research in Europe Good information and support of patient groups can help to understand
  11. 11. Potential benefits of a clinical trial Personal benefit: • Some new therapies only available in trials • Closer monitoring • Therapy optimization trials with more effective or more tolerable regimens Altruistic reasons: • Achieving progress – beyond our personal case
  12. 12. Understanding risks of clinicaltrials Uncertainty always brings risks, but trials are strongly regulated & assessed Risks of participation in trials • Risks of the unknown: will it work? Will it do harm? • Impact on quality of life, unpleasant/more diagnostics • Protection from unauthorized use of data and tissue Good information is essential for informed consent (of the whole family)
  13. 13. Where to find trials? Research networks„ websites EU Clinical Trials Register https://www.clinicaltrialsregister.eu Doctors & Patient organisations
  14. 14. Patient organisations are‚navigators‘ for patients Most „official“ information portals fail on rare cancers: Budget for the "Top 17". Patient organisations inform, help, support • Explanation of disease, therapy, side effects • Managing anxiety about disease and doctor • Information on clinical trials (centers, doctors, results) • Working in partnership with researchers • Trustable web resources
  15. 15. International Rare Cancer AdvocacyOrganisations (just to name some) International Brain Tumour Alliance (IBTA) - http://www.theibta.org Sarcoma Patients Euronet (SPAEN) - http://www.sarcoma-patients.eu CML Advocates Network - http://www.cmladvocates.net International Kidney Cancer Coalition (IKCC) - http://www.ikcc.org European Cancer Patient Coalition (ECPC) – http://www.ecpc-online.org European Rare Disease Organisation (EURORDIS) - http://www.eurordis.org European Waldenström Network (EWMNetwork) - http://www.ewmnetwork.eu/ Myeloma Patients Europe (EMP, http://www.emp-myeloma.eu and ME, http://www.myeloma-euronet.org) Lymphoma Coalition - http://www.lymphomacoalition.org Myelodysplastic Syndromes Foundation - www.mds-foundation.org Carcinoid & Neuroendocrine Tumor Society - http://www.cnets.org Carcinoid Cancer Foundation - http://www.carcinoid.org/ International Confederation Of Childhood Cancer Parent Organizations (ICCCPO) - http://icccpo.org/ …and many more…
  16. 16. Patients – as co-researchers? "More needs to be done: rare cancers will never be a priority unless the patients make it one. Patients themselves must therefore play a larger role in driving forward the search for therapies. They are able to see connections that have eluded scientists."
  17. 17. Patients have a complementaryexpertise that is invaluable to research Patients experience is complementary, not substitutive Examples • What it means to live with cancer • Explain the value and barriers of Driving force participation in cancer trials Co-researcher Reviewer • Improve informed consent • Make trial results widely known Advisor • Provide insight on adherence, CAM Information provider use, QoL Research subject • Fundraise to make research happen PatientPartner FP7 Project (2010)
  18. 18. The Patients’ Academy:empowering patients on medical R&D Launched Feb 2012, runs for 5 years, 29 consortium members, PPP of EU Commission and EFPIA will develop and provide objective, credible, correct, up-to-date knowledge about medicines R&D will build competencies & expert capacity among patients & public will facilitate patient involvement in R&D to support industry, academia, authorities and ethics committees
  19. 19. Rare Cancers:Rare, but not alone. Jan Geissler  jan@patientsacademy.eu  Twitter @jangeissler  http://www.patientsacademy.eu  http://www.cmladvocates.net

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