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Jan Geissler
European Patient Perspective
on Access and Innovation
with Multiplex Genomic
Testing
Jan Geissler
Co-Founder Leukemia Patient Advocates Foundation / CML Advocates Network
Member of the ECCO Patient Advisory Committee
Leader of FUTURES Team at European Patients’ Academy (EUPATI)
Jan Geissler
Patients have great hopes in genomic testing to
lead us into targeted, personalized medicine
Individual genetic makeup – and that of the tumour – helps to
understand biology of the disease and plan the most effective, targeted
treatments in the individual patient.
• Prevent progression and death through early diagnosis and detection
of relapse
• Avoid exposure to ineffective treatment:
apply only treatments that are likely to work
• Risk stratification: identify high risk patients to avoid jeopardizing
quality of life too early with overtreatment of low risk patients
Jan Geissler
Example CML: If personalized medicine holds its
promise, it’s all about access to diagnostics and
treatment
Example Chronic
Myeloid Leukemia:
All CML patients should
have
• access to all five CML
drugs (TKIs) whenever
needed
• regular standardized
PCR
but is this reality?
Not even in the USA.
Years after diagnosis
Overallsurvival
2002-2009
5-year survival 92%
1997-2003
5-year survival 71%
1995-2001
5-year survival 63%
1986-1994
5 year survival 53%
1983-1994
1983-1994 5 year survival 38%
Source: German CML Study Group
NO ACCESS TO CURRENT DIAGNOSTICS AND DRUGS
ACCESS TO DRUGS & DIAGNOSTICS
Jan Geissler
More than 200 cancers, skyrocketing drug costs:
Will genomic testing help us be more effective & efficient?
Structure
of DNA
Restriction
enzymes
DNA
sequencing
Recombinant
DNA
Human
insulin
Dolly
the sheep
Human
genome v1milestones
Source: Nature – How to improve R&D productivity: the pharmaceutical industry's grand challenge, Paul et al (2010)
Jan Geissler
Is genomic testing the next
step towards personalized
medicine for all,
or are we creating the next
wave of supermodels:
lovely to look at, very costly,
accessible only to a few,
of no real value to many
Courtesy of Richard Sullivan, King‘s College (2018)
Photo 1: unknown male model, Creative Commons Zero License (CC0), source
Photo 2: Photograph by Designecologist, Creative Commons Zero license (CCO), source
Jan Geissler
Access issues to testing may increase
inequalities of access to innovative care
What if patients can’t access a potentially effective drug just
because
• patients can’t access the genetic test for the biomarker
because the center’s favorite lab can’t provide it,
because the treating physician can’t deal with genomic testing,
because the patients insurance doesn’t reimburse it?
• patients don’t understand the information they receive,
and then don’t consent to doing the testing?
Jan Geissler
How do we make it work?
Jan Geissler
It’s not just about genetic testing, but about
research on Big Data – which we support
• Big Data: Increasing availability of heterogeneous large-scale
databases with genomics, proteomics, metabolomics data will
help identify novel patient aggregates and characterize
clinically relevant information
• Patient engagement in Big Data initiatives like IMI2 HARMONY
(e.g. relevant outcomes, de-identification mechanisms)
increase trust and patient participation in precision medicine
• Citizen controlled data collection, storage & sharing may help
further
Jan Geissler
Shared decision making in genomic testing
• Increased demand on direct to consumer genomic testing
demonstrates there is unmet need by patients
• With appropriate information and counseling, patients will
deal with probabilistic measure of certainty on diagnosis or
prognosis
• Information should be made available in appropriate time and
in a language that patients understand
• Can this be done in the average 8.1 minutes counseling time?
• Patient organizations can help with patient communication
Jan Geissler
Patient-driven biobank PATH: Ensuring future
(genomic) testing on the primary tumour
• More than 10.600 German women
donated their BC tumour tissue and
blood into the PATH biobank
• One aliquot for research, one remains
property of the patient for future
diagnostics
Patients and Methods of the PATH Biobank – A Resource for Breast Cancer Research
Waldmann, Geburtsh Frauenheilk (2014)
Jan Geissler
Genetic testing and patient autonomy in
terms of incidental findings
Package Content Opt-in/
Opt-out
Moral
justification
When to offer?
Default package Life-saving data and data of
immediate clinical urgency
Opt-out Beneficence Always
Additional
package #1
Data of potential or moderate
clinical utility
Opt-in Autonomy
(negative account)
Context-specific
Additional
package #2
Data of reproductive
significance
Opt-in Autonomy
(negative account)
Context-specific
Additional
package #3
Data of personal or
recreational significance
Opt-in Autonomy
(negative account)
Context-specific
Bredenoord et al, Hum Mutat, 2011
(negative account = right not to know)
Jan Geissler
Physicians need the tools, education, time
and remit for genomic testing
• More Education – Genomic counseling should become part of HCP’s
education, supported by physician guides for clinicians,
and educational tools to support patients
• Decision support tools – Infrastructure for processing and interpreting
genomic data in daily clinical practice should not just be the privilege
of the top-notch centers
• Better regulation – Large heterogeneity in the way European countries
have regulated genetic testing (medical supervision, genetic
counselling and informed consent), incl. direct to consumer testing
Legislation of direct-to-consumer genetic testing in Europe: a fragmented regulatory landscape. Kalokairnou, J Community Genet (2018)
Jan Geissler
Conclusion
• Moving from organ-based oncology to biomarker-based personalized
medicine will become the norm
• Patients see great potential in multiplex genomic testing,
IF results translate into clinically relevant actions
• Medical supervision, genetic counselling, informed consent, direct-to-
consumer testing, regulatory heterogeneity are challenges - but they
can be tackled jointly
• Not just supermodels for some - access to genomic testing and to
therapy may become/remain the main barrier to access to effective
innovative treatments
Jan Geissler <jan@patvocates.net>

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European Patient Perspective on Access and Innovation with Multiplex Genomic Testing

  • 1. Jan Geissler European Patient Perspective on Access and Innovation with Multiplex Genomic Testing Jan Geissler Co-Founder Leukemia Patient Advocates Foundation / CML Advocates Network Member of the ECCO Patient Advisory Committee Leader of FUTURES Team at European Patients’ Academy (EUPATI)
  • 2. Jan Geissler Patients have great hopes in genomic testing to lead us into targeted, personalized medicine Individual genetic makeup – and that of the tumour – helps to understand biology of the disease and plan the most effective, targeted treatments in the individual patient. • Prevent progression and death through early diagnosis and detection of relapse • Avoid exposure to ineffective treatment: apply only treatments that are likely to work • Risk stratification: identify high risk patients to avoid jeopardizing quality of life too early with overtreatment of low risk patients
  • 3. Jan Geissler Example CML: If personalized medicine holds its promise, it’s all about access to diagnostics and treatment Example Chronic Myeloid Leukemia: All CML patients should have • access to all five CML drugs (TKIs) whenever needed • regular standardized PCR but is this reality? Not even in the USA. Years after diagnosis Overallsurvival 2002-2009 5-year survival 92% 1997-2003 5-year survival 71% 1995-2001 5-year survival 63% 1986-1994 5 year survival 53% 1983-1994 1983-1994 5 year survival 38% Source: German CML Study Group NO ACCESS TO CURRENT DIAGNOSTICS AND DRUGS ACCESS TO DRUGS & DIAGNOSTICS
  • 4. Jan Geissler More than 200 cancers, skyrocketing drug costs: Will genomic testing help us be more effective & efficient? Structure of DNA Restriction enzymes DNA sequencing Recombinant DNA Human insulin Dolly the sheep Human genome v1milestones Source: Nature – How to improve R&D productivity: the pharmaceutical industry's grand challenge, Paul et al (2010)
  • 5. Jan Geissler Is genomic testing the next step towards personalized medicine for all, or are we creating the next wave of supermodels: lovely to look at, very costly, accessible only to a few, of no real value to many Courtesy of Richard Sullivan, King‘s College (2018) Photo 1: unknown male model, Creative Commons Zero License (CC0), source Photo 2: Photograph by Designecologist, Creative Commons Zero license (CCO), source
  • 6. Jan Geissler Access issues to testing may increase inequalities of access to innovative care What if patients can’t access a potentially effective drug just because • patients can’t access the genetic test for the biomarker because the center’s favorite lab can’t provide it, because the treating physician can’t deal with genomic testing, because the patients insurance doesn’t reimburse it? • patients don’t understand the information they receive, and then don’t consent to doing the testing?
  • 7. Jan Geissler How do we make it work?
  • 8. Jan Geissler It’s not just about genetic testing, but about research on Big Data – which we support • Big Data: Increasing availability of heterogeneous large-scale databases with genomics, proteomics, metabolomics data will help identify novel patient aggregates and characterize clinically relevant information • Patient engagement in Big Data initiatives like IMI2 HARMONY (e.g. relevant outcomes, de-identification mechanisms) increase trust and patient participation in precision medicine • Citizen controlled data collection, storage & sharing may help further
  • 9. Jan Geissler Shared decision making in genomic testing • Increased demand on direct to consumer genomic testing demonstrates there is unmet need by patients • With appropriate information and counseling, patients will deal with probabilistic measure of certainty on diagnosis or prognosis • Information should be made available in appropriate time and in a language that patients understand • Can this be done in the average 8.1 minutes counseling time? • Patient organizations can help with patient communication
  • 10. Jan Geissler Patient-driven biobank PATH: Ensuring future (genomic) testing on the primary tumour • More than 10.600 German women donated their BC tumour tissue and blood into the PATH biobank • One aliquot for research, one remains property of the patient for future diagnostics Patients and Methods of the PATH Biobank – A Resource for Breast Cancer Research Waldmann, Geburtsh Frauenheilk (2014)
  • 11. Jan Geissler Genetic testing and patient autonomy in terms of incidental findings Package Content Opt-in/ Opt-out Moral justification When to offer? Default package Life-saving data and data of immediate clinical urgency Opt-out Beneficence Always Additional package #1 Data of potential or moderate clinical utility Opt-in Autonomy (negative account) Context-specific Additional package #2 Data of reproductive significance Opt-in Autonomy (negative account) Context-specific Additional package #3 Data of personal or recreational significance Opt-in Autonomy (negative account) Context-specific Bredenoord et al, Hum Mutat, 2011 (negative account = right not to know)
  • 12. Jan Geissler Physicians need the tools, education, time and remit for genomic testing • More Education – Genomic counseling should become part of HCP’s education, supported by physician guides for clinicians, and educational tools to support patients • Decision support tools – Infrastructure for processing and interpreting genomic data in daily clinical practice should not just be the privilege of the top-notch centers • Better regulation – Large heterogeneity in the way European countries have regulated genetic testing (medical supervision, genetic counselling and informed consent), incl. direct to consumer testing Legislation of direct-to-consumer genetic testing in Europe: a fragmented regulatory landscape. Kalokairnou, J Community Genet (2018)
  • 13. Jan Geissler Conclusion • Moving from organ-based oncology to biomarker-based personalized medicine will become the norm • Patients see great potential in multiplex genomic testing, IF results translate into clinically relevant actions • Medical supervision, genetic counselling, informed consent, direct-to- consumer testing, regulatory heterogeneity are challenges - but they can be tackled jointly • Not just supermodels for some - access to genomic testing and to therapy may become/remain the main barrier to access to effective innovative treatments Jan Geissler <jan@patvocates.net>