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200 years of Parkinson’s disease: still no cure, but EU policy must drive improvements in quality of life

Brussels, 29 March 2017 - To mark the 200 year anniversary of the discovery of Parkinson’s disease, the European Parkinson’s Disease Association (EPDA) held a high-level policy workshop in the European Parliament in Brussels to discuss cross-cutting challenges to timely diagnosis and individualised Parkinson’s treatment and care. Together with MEP Marian Harkin, attendees identified areas where the European Union (EU) can add real value, including measures to reduce discrimination in the workplace and inequalities in access to Parkinson’s treatment and healthcare. It was agreed that the EU can also provide much-needed research funds for data collection, new treatments and services that improve quality of life.

Commenting at the workshop in the European Parliament, EPDA President Knut-Johan Onarheim said,

“This year - 2017 - marks the 200 year anniversary of the discovery of Parkinson’s by James Parkinson. There are more than 1.2 million people living with this appalling condition in Europe, a number that is set to double by 2030. Rising prevalence is compounded by significant hurdles to timely diagnosis and individualised Parkinson’s treatment and care, including a lack of education of non-specialist clinicians and poor coordination between members of the multidisciplinary healthcare team. People also face unacceptable levels of social stigma and discrimination when they remain in full-time employment. It is time to turn political support into policy action, and do better for people with Parkinson’s and their families.”

The workshop convened 30 high-level stakeholders from EU institutions and across the Parkinson’s community, including several of national Parkinson’s associations. The European Commission was represented by Emmanuelle Grange, Head of Unit for Disability and Inclusion in Directorate-General Employment. Respected speakers included Ronnie Shahmoon, a person with Parkinson’s diagnosed aged 29, as well as an entrepreneur, artist, inspirational author and passionate speaker on self-empowerment issues, and Professor Bastiaan Bloem, Medical Director of Parkinson Center Nijmegen in the Netherlands and Founder and Board Member of ParkinsonNet. Michela Tinelli1, Assistant Professorial Research Fellow at the London School of Economics’ Health and Social Care department also spoke.

Commenting on the responsibility of the EU institutions in this area, MEP and Chair of the European Parliament’s Interest Group on Mental Health, Well-being and Brain Disorders, Marian Harkin said:

“I have been inspired by the discussions here today. The extent of Parkinson’s in Europe – and the extraordinary impact it has on people with the disease and their families – makes this a European priority issue. I strongly believe that patient empowerment is the most effective way to manage this and other neurodegenerative conditions, and the EU can take a leadership role on this front. I look forward to working with the EPDA and the rest of the Parkinson’s community to achieve better outcomes for patients and carers in public health, employment and long-term care.”

Professor Bastiaan Bloem, Irish MEP Marian Harkin and Parkinson's Association of Ireland CEO Paula Gilmore supporting the #UniteForParkinsons campaign in the European Parliament on 29 March 2017

During a panel debate moderated by Donna Walsh, Executive Director at the European Federation for Neurological Disease Associations (EFNA), participants identified several areas where the EU can play a leading role in coordinating an ambitious and coordinated policy response to Parkinson’s:

  • Enhancing access to timely diagnosis, appropriate treatments, individualised care and essential social services;
  • Empowering patients to take an active role in decisions about their Parkinson’s treatment and care pathways by promoting a bottom-up approach to healthcare;
  • Improving employment conditions and reducing social stigma;
  • Addressing fragmented healthcare and sharing good practices across Member States;
  • Supporting quality of life and cure research through continued funding.

With regard to the EU’s ambitions in the area of employment and social policies in particular, the European Commission’s Emmanuelle Grange commented:

“Community-based care and independent living, better accessibility to products and services, non-discrimination in access to employment, and reasonable accommodation at work are key factors that contribute to a better quality of life for people with Parkinson disease and their families. Joint efforts of EU institutions, Member States, economic actors and patient groups are essential to achieve concrete improvements in these areas.”

In terms of next steps, the EPDA will continue to advocate for a stronger policy response from the EU and national governments, and will work closely with its members, representatives of the EU institutions and its partners to achieve its objectives in the short, medium and long-term.

About Parkinson’s disease

Parkinson’s is a progressive, chronic and complex neurodegenerative disease that has no cure. It affects all aspects of daily living and is one of the most common neurodegenerative diseases. The effects of Parkinson’s invariably involve the physical, cognitive and psychological domains, and impact across nearly every cultural, social and economic boundary.

About the EPDA

The EPDA is a non-political, non-religious and not-for-profit organisation. As the leading voice for Parkinson’s in Europe, we provide information and resources to all Parkinson’s stakeholders, raise awareness of the disease’s complexities and impact, and advocate for concrete policy change that benefits the Parkinson’s community.

For further information about the EPDA in Brussels, visit our website. To learn more about the 2017 global campaign, #UniteForParkinsons, please visit this website. For all other inquiries, please contact advocacy@epda.eu.com


References
1. Michela Tinelli, Panos Kanavos, Federico Grimaccia (LSE), The value of early diagnosis in treatment in Parkinson’s disease - A literature review of the potential clinical and socioeconomic impact of targeting unmet needs in Parkinson’s disease (2016)

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