EPDA, declaración consensuada sobre Párkinson en Europa

La Asociación Europea de la Enfermedad de Parkinson (EPDA, en sus siglas en inglés), ha lanzado ‘The European Parkinson’s Disease Standards of Care Consensus Statement’, una guía que describe por primera vez cómo deberían ser tratados los afectados de Párkinson. El documento también sugiere un modelo de gestión óptima dirigido a las autoridades destinadas a mejorar el nivel de atención a los afectados de toda Europa.
La enfermedad de Parkinson afecta a más de 150.000 personas en España y más de 1.2 millones en Europa y se prevé que su incidencia se duplique para 2030. El Párkinson es la segunda enfermedad neurodegenerativa más común y su incidencia seguirá creciendo como resultado del envejecimiento de la población. En consecuencia, se estima que el coste anual para el sistema de salud europeo sea de 13.9 billones de euros. En España, el coste medio de los tratamientos que necesita un afectado que se encuentra en los estadíos I, II y III es de 7.000 euros al año, aproximadamente; para afectados que se encuentran en estadíos más avanzados, esta cifra se duplica. Estos costes son asumidos por los afectados y sus familiares.
Esta declaración ha sido desarrollada, revisada y refrendada por especialistas europeos en Párkinson, afectados, familiares y 45 federaciones de afectados de toda Europa, entre las que se encuentra la Federación Española de Párkinson. El documento recoge ocho puntos clave donde los dirigentes europeos deberían centrarse para mejorar el nivel de atención a los afectados de EP:
- Aportar iniciativas que aseguren que los afectados de EP tienen acceso a una buena calidad de vida.
- Reducir las desigualdades en el tratamiento y la gestión del Párkinson.
- Mejorar la financiación de la investigación y definir prioridades en investigación.
- Invertir en tratamiento óptimo y estrategias de mantenimiento.
- Aumentar la sensibilización pública y profesional del Párkinson.
- Minimizar el estigma y la discriminación.
- Reforzar el nivel de cuidado neurológico dentro de los sistemas sanitarios europeos.
- Proporcionar la financiación adecuada que respalde el trabajo de las asociaciones de afectados.
La necesidad de la puesta en marcha de esta declaración surgió a partir de la campaña ‘Movimiento por el Cambio’. Los resultados de este año, que revelaron algunas señas alarmantes sobre la desigualdad existente, fueron publicados en la revista European Journal of Neurology.

The EPDA launches “unique” Consensus Statement

The EPDA launches “unique” Consensus Statement – a guideline to help policymakers take the positive steps needed to improve the lives of the growing number of people affected by Parkinson’s disease and to reduce its “unsustainable” €13.9 billion annual bill.

The European Parkinson’s Disease Association (EPDA) has launched The European Parkinson’s Disease Standards of Care Consensus Statement, which describes for the first time how people with Parkinson's disease should be managed. The document also suggests an optimum management model, which, if implemented by policymakers, would improve standards of care across Europe.

More than 1.2 million people live with Parkinson’s in Europe today and this number is forecast to double by 2030. Parkinson’s is the second most common neurodegenerative disease (after Alzheimer’s disease), and its prevalence will continue to grow as the population ages. As a result, the economic impact of the disease is enormous and has been estimated to cost European healthcare systems €13.9 billion at year.

The Consensus Statement has been developed, reviewed and endorsed by European Parkinson’s specialists, people with Parkinson’s, carers and 45 national Parkinson’s organisations. As well as containing alarming statistics on the current cost of Parkinson’s across numerous European countries, the document also features detailed information on the importance of an early diagnosis for people with Parkinson’s and ensuring they receive access to doctors with a special interest in the disease; the need for support services and continuous care; and compliance issues. It ends with eight key areas that European policymakers need to concentrate on to effect change. Specifically, it calls on them to:

·                     support initiatives that ensure people with Parkinson’s receive equal access to good-quality, specialised care across Europe

·                     reduce inequalities in the treatment and management of Parkinson’s

·                     improve funding for Parkinson’s research and define research priorities

·                     invest in optimum treatment and maintenance strategies

·                     increase public and professional awareness of Parkinson’s

·                     minimise stigma and discrimination

·                     strengthen the level of neurological care within European healthcare systems

·                     provide adequate funding that supports the continued work of national Parkinson’s organisations.

“Opportunities do exist to improve the care for people with Parkinson’s in both the treatment and management of the disease, and the Consensus Statement highlights those opportunities,” said EPDA president Knut-Johan Onarheim. “It is a call to action for policymakers to change the status quo and realise that early and appropriate pharmacological intervention can result in positive outcomes for society. It has been shown to not only reduce the economic impact to both the individual and to society but also enable people living with the disease to remain in the workplace for longer, thereby improving their quality of life and contribution to society.”

The need for a Parkinson’s Consensus Statement was identified following initial data from the EPDA’s Move for Change campaign, a three-year pan-European survey (which began in April 2010) that asks people with Parkinson’s what it is like to live with the disease in Europe today. The results from the first year – which revealed some alarming evidence that inequalities exist – were published in a special report in the October issue of the European Journal of Neurology.

“The Consensus Statement is unique,” said ex-MEP and EPDA patron John Bowis OBE. “Inspired by real-life accounts from the people who live with this challenging illness every day – and created by Parkinson’s experts with help from people with Parkinson’s – it is the first document of its kind to support and encourage the drive for equality and optimisation of Parkinson’s treatment and management at both a European and a national level. It needs to be supported at the highest level.”

To showcase the launch of the Consensus Statement and the results from the Move for Change campaign – and also to help raise the profile of Parkinson’s with policymakers – the EPDA held a meeting in the European Parliament on 22 November, entitled ‘Chronic diseases in an ageing population – a spotlight on Parkinson’s disease’. Those present at the event – which was hosted by MEPs Linda McAvan and Frieda Brepoels and moderated by Bowis – included two high-profile European Commission officials in public health and health innovation policy, Maria Iglesia-Gomez and Paul Timmers.

“There has been little progress in the definition of parameters of good-quality care in Parkinson’s disease – until now,” said Iglesia-Gomez. “The Consensus Statement proposes practical strategies that can help improve Parkinson’s standards of care across Europe. Such a document could not be more timely for our ageing European population and fits very well with the European Commission’s current focus on active and healthy ageing.”

McAvan agreed, adding: “The Consensus Statement is a much-needed document. It succinctly and clearly paints a very stark picture: that Parkinson’s is a disease that needs to be given greater visibility and awareness. It provides clear direction on the positive steps that can be taken by policymakers to improve the treatment and management of this chronic neurodegenerative condition.”

Brepoels also commented: “A parliamentary event such as this is an excellent platform to get the message across to a wider audience. It also helps to identify MEPs that have a special interest in this serious issue and establishes how this kind of support can be taken forward into action.”