6th Patients' Rights Day - Amanda Worpole, European Federation of Neurological Associations

7/31/2019 6th Patients' Rights Day - Amanda Worpole, European Federation of Neurological Associations

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European Federation of Neurological

Associations (EFNA)

Amanda Worpole

Executive Director, EFNA

Our Vision: A better quality of life for people in Europe living

with a neurological disorder.

Our Mission

To influence policy makers and legislators in Europe

To communicate with our members to achieve positive change

To establish strong partnerships and alliances


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The world is living longer

A baby girl born in Japan has a

50/50 chance of living 100 years


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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


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European Brain Council study

The number of persons with defined disorders of the

brain in Europe in 2010

The total cost per person per year related to each

disease by specifying direct and indirect costs

The total cost per disorder and country

The total cost of brain disorders in all of Europe

www.europeanbraincouncil.org

Cost of Disorders of the Brain in Europe 2010Gustavsson et al. Cost of disorders of the brain in Europe 2010. Eur. Neuropsych. (2011) 21, 718-779
http://www.europeanbraincouncil.org/http://www.europeanbraincouncil.org/


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Cost of brain disease

Dementia - 16,584 per patient per year;

105,163 million in total

Parkinsons disease - 11,153 per patient per year;

13,933 million in total

Stroke - 7775 per patient per year;64,053 million in total


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Policy Implications for European Research

Insufficient funding for disorders of the brain

From a societal perspective, the return on

investment in brain research far exceeds the

return from any other branches of research

FP7: Specific mention of brain research

Horizon 2020: must address clinical and

basic brain research


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Policy implications for European health care

Further increase of the burden due to the

increasing trend in life expectancy in Europe

A coordinated policy covering all disorders ofthe brain is needed

Increased focus on prevention should be ofhigh priority


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Policy implications for European health educators

Only 8% of clinical education at medical

schools for psychiatry and neurology.

Even less in other health professions

Treatment for brain disorders have

drastically improved. Increased curricula andteaching efforts are needed


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Policy implications - European pharmaceutical industry

Pharmaceutical industry moving out of Europe

Investments in drugs for brain disappointing

Drug development for brain disorders is

declining

Unnecessary regulatory barriers to drugs


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Social and Personal Activities

relationships with friends

pastimes and hobbies

family members

holidays/breaks

Anxiety and Depression

mental health and well-being

Anxiety

lack of energy and motivation

depression.

The PDQ-Carer


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The PDQ-Carer

Self-care:

health

health behaviour

Stress

feelings of impatience and anger

feelings of being undervaluedweighed down by responsibilities.


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Clinical trails & medicines

Inclusion of older people in clinical trialsreal life includes co-morbidities &

polypharmacy

Side effects

Drug interactions

Protocols

Outcomes: beyond the clinical

Information for patients

Pharmacovigilance


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Risk factors from conception onwards

Need to take care of our brains

Healthy diet

Stay away from tobacco Modest alcohol intake

Avoid recreational drugs

Drink water


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Thank you

Documents

6th Patients' Rights Day - Amanda Worpole, European Federation of Neurological Associations