Dr Mary Baker MBEPresident, European Brain Council
Patron, European Parkinson’s Disease Association
Societal ChallengesCopenhagen
1 February 2012
Danish Ministerial ConferenceHorizon 20/20
Costs of disorders of the brain
• €798 billion across 30 countries and 19 groups of disorders
• Has increased from €386 billion in 2004
In Europe 2010:
European Neuropsychopharmacology (2011) 21, 718-779
Distribution of costs:Total disorders of the brain
European Neuropsychopharmacology (2011) 21, 718-779
Distribution of Costs:Neurological & Mental disorders
Neurological disorders Mental disorders
European Neuropsychopharmacology (2011) 21, 718-779
The world is living longer
A baby girl born in Japan has a 50/50 chance of living 100 years
Global ageing in the 21st century
‘The world stands on the threshold of a social transformation - even a revolution - with few parallels in humanity's past.... perhaps two-thirds of all people who have ever reached the age of 65 are alive today.’
Peter G. Peterson
The changing role of women
In the 1920’s, a couple in their 80’s had 44 female relatives -14 of these did not work outside the home environment
In the year 2000, a couple in their mid 70’s had 13 female relatives -3 of these did not work outside the home environment
What is the situation in 2012?
Polypharmacy
Provision of culturally relevant care
The challenge of migration
Time with the doctor
.....12 minutes
Access to medication
A very uneven playing field
Counterfeit Medicines
2008 ‘Project Medifake’ European Customs initiative discovers…
3 million packs captured over two months 4 MHRA batch recalls in 2007 EAASM found 62% of medicines bought from internet
to be fake or substandard (Counterfeit Superhighway - 2008)
Counterfeit medicines
EU Legislation anticipated - this will tighten supply chain
Way forward
Innovation
Trust
Safety versus innovation
Quote from cancer patient:
‘I am already in an unsafe world, a little more unsafeness doesn’t worry me’
Education of benefit/risk
Dr Albert Jovell, Barcelona
Transparency
HMA/EMA Guidance Document on the identification of commercially confidential information and protection of personal data within the structure of the marketing authorisation (MA) dossier – release of information after granting of a marketing authorisation
The challenge ... effective communication
New approach to clinical trials
Patient reported outcomes
Develop a measurement for central nervous diseases in partnership with:
• academia
• clinicians
• patients and their families
The Regulator and the Payer
Professor Guido RasiChief Executive Officer
European Medicines Agency (EMA)
Sir Michael RawlingsChairman
National Institute of Health & Clinical Excellence (NICE)
Engagement with the Payers
• Ageing
• Infertility
• Sexual health
• Smoking
60% of NHS budget is spent on lifestyle issues:• Drug Addiction
• Alcohol
• Obesity
Distress is not enough
• Establish credibility• Collect evidence• Contribute to discussions• Understand health
technology assessments
Patient advocacy groups need to:
HTA Summer School for patient groups
• September 2009• May 2010• June 2010• September 2010• June 2011• September 2011
Working for people living with brain disorders
Collaboration between EFNA and London School of Economics:
The Patient’s journey
Information is needed from:
• Clinician – about the disease
• Industry – about the medication
• Patient NGOs – about the fellow travellers
A major challenge – societal engagement
• How do we involve patients/carers in research?
• An informed patient is a cost effective patient (Wanless)
Join the team
Working together
Patients have a voice and need:• to be heard• to be listened to• to be inclusive
Today Future
Today we diagnose and treat based on symptoms
and a subjective interpretation of
symptoms
In the future we diagnose and treat based
on biology and select medication based on an
objective evaluation of the benefit/risk for the individual patient
The future of medicine
Competition
• The pharmaceutical industry• The clinicians• Patient organisations
Science should be shared
From the bench to the bedside
Rx
HTA review ~ 2 years
New drug application & review
~ 2 years
Preclinical & clinical development ~ 8 years
Management of long term chronic illness
• The ability to adapt and self manage
• To be able to participate in social activity despite all limitations
The Patient Academy
Partnership with London School of Economics
Objectives
• Patient-centered research
• Patient-centered training
understanding benefit/risk
patient reported outcomes
improving health literacy
Partnership
• The grand challenge of society requires co-operation and partnership from a range of stakeholders
• Creating high performing networks is essential
• European Brain Council and the Year of the Brain are examples of this in practice
What matters most ...
‘It is not the strongest of the species that survives nor the most intelligent that survives. It is the one that is most adaptable to change.’
Charles Darwin1809 - 1882