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

A quick fix

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