Leading MEP declares Parkinson’s “a European priority issue”
Author: Almaz OhenePublished: 5 April 2017
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Ahead of World Parkinson’s Day on 11 April, Marian Harkin, Member of European Parliament (MEP) declares Parkinson’s “a European priority issue” in front of lawmakers, stakeholders and Parkinson’s campaigners at European Parliament
Speaking at a high-level workshop hosted by the European Parkinson’s Disease Association (EPDA), Marian Harkin, MEP and chair of the European Parliament’s Interest Group on Mental Health, Well-being and Brain Disorders, discussed the “extraordinary impact” of Parkinson’s and called it “a European priority issue”.
Harkin was among the lawmakers, stakeholders and other Parkinson’s activists – including Professor Bastiaan Bloem – who were invited to the workshop held at the European Parliament in Brussels, Belgium, by the EPDA to mark the 200th anniversary of the discovery of Parkinson’s disease.
Just in time for the #UniteForParkinsons campaign, the event brought together 30 members of the Parkinson’s community from EU institutions, Parkinson’s healthcare facilities and several leaders of national Parkinson’s associations, advocating for a stronger policy response to Parkinson’s at the European level and promoting a new Parkinson’s rating scale developed by the EPDA and its partners.
Commenting on the responsibility of the EU institutions, Harkin said: “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.”
Professor Bastiaan Bloem, medical director of the Parkinson Center Nijmegen in the Netherlands, presented a talk on the future of Parkinson’s healthcare partnerships. He acknowledged that Parkinson’s disease is here for the next few decades and that while others are working on the cure, he is working on the care in the form of the multi-disciplinary treatment programme ParkinsonNet, of which he is a co-founder.
He said: “An integrated healthcare approach enables leaps in the levels to better quality of care with fewer disease complications. The cost of Parkinson’s healthcare in the Netherlands is going down by €30 million each year”.
“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”
Knut-Johan Onarheim, president of the EPDA, said: “This year 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 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.”
During a panel debate moderated by Donna Walsh, executive director at the European Federation for Neurological Disease Associations (EFNA), the My PD Journey group identified several areas where the EU could play a leading role in coordinating an ambitious and coordinated policy response to Parkinson’s:
1. Enhancing access to timely diagnosis, appropriate treatments, individualised care and essential social services.
2. Empowering patients to take an active role in decisions about their treatments and care pathways by promoting a bottom-up approach to healthcare.
3. Improving employment conditions and reducing social stigma.
4. Addressing fragmented healthcare and sharing good practices across Member States.
5. Supporting quality of life and cure research through continued funding.
My PD Journey
‘My PD Journey’ is a multi-stakeholder European coalition – led by the EPDA –working towards improving the lives of people living with Parkinson’s disease. Their mission is to enable tailored care for people with Parkinson’s throughout their journey. The initiative involves representatives across the entire Parkinson’s disease community – including European umbrella healthcare organisations, people with Parkinson’s, carers and members of the multidisciplinary healthcare team.
With regard to the EU’s ambitions in the area of employment and social policies in particular, Emmanuelle Grange, from the European Commission, said: “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.”
The EPDA pledged to 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.
Read more: My PD Journey: landmark Parkinson’s summit highlights urgent need for new composite scale
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