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.”
