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What the professionals need to know to improve healthcare and research

The 10th European Congress on Epilepstology will take place in London on September 30th – October 4th this year.

There will be a particular session focussing on epilepsy healthcare and research.

Time: Tue, Oct 2. 2012 14:30 – 16:00

Room: Hall G

“What the professionals need to know to improve healthcare and research”

Chairs: Emilio Perucca and Mike Glynn

What is the best political agenda for epilepsy in Europe?

Speaker: Nirj Deva, MEP

Epilepsy on European health care agendas: Cost vs. Outcomes 

Speaker: Prof. Torbjörn Tomson

Epilepsy on the EU research agenda 

Speaker: Dr. Philippe Cupers, DG Research & Innovation’s Health Directorate

For further information please visit the website: http://www.epilepsylondon2012.org/

EU Commission update information on epilepsy

The European Commission has recently created a new EU Health Portal and it is available through the following link:

http://ec.europa.eu/health-eu/

Aligned to current trends in web design, the new look provides a more prominent space for news, events, press releases and videos. It also highlights a new feature of the Portal: news articles to explain to citizens especially selected health topics and to present results of projects in the field of public health financed by the EU.

Also, encouragingly, the epilepsy page has been updated and is available here:

http://ec.europa.eu/health/major_chronic_diseases/diseases/brain_neurological/index_en.htm#fragment5

EU Reflection Process on Chronic Disease

1. General overview

The International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE), European Joint Task Force on Epilepsy welcomes the EU reflection process on Chronic Disease. This is a positive initiative that allows stakeholders to contribute to a highly important debate.

Although the European Union’s competence in health is limited, the Maastricht Treaty made health an official EU competence for the first time. It stated that “the EU shall contribute towards ensuring a high level of human health protection by encouraging cooperation between Member States…..”

The Treaty of Amsterdam further built on this…Art.152 stipulates that “a high level of human health protection shall be ensured in the definition and implementation of all Community policies and activities”

Projections of future mortality and burden of disease show that chronic diseases will continue to be the biggest contributor to mortality and disability in high−income countries, and chronic disease will increase. The share of DALYs[1] associated with chronic or non-communicable conditions in high-income countries is projected to rise from 86% in 2005 to 89% in 2030.[2]

It is submitted that the European Union has a major and important role to play in ensuring that the response to the threat of chronic diseases is properly, carefully and adequately managed in Europe.

Leonardi and Ustun, using the DALY measurement[3], note that the burden of epilepsy for the year 2000 accounted for 1% of all diseases in the world.[4]

Epilepsy is a treatable condition and yet, professionals who treat people with epilepsy, often do not have sufficient specialized knowledge of the condition, and, in some countries antiepileptic drugs are not always available or are not affordable and diagnostic facilities are lacking or are inadequate. It is estimated that the 6 million people with active epilepsy in Europe cost over €20 billion per year, and despite this, very few European countries have national plans for managing the disorder.[5]

The ILAE IBE European Joint Task Force on Epilepsy urge the European Union and the Member State to devote more time and money to tackling the huge burden of chronic diseases in Europe. The efforts of the European Union in strategies on cancer, alzheimer’s and rare diseases are to be commended. However, it is respectfully submitted that more can be done to reduce the burden of other chronic diseases, such as epilepsy.

2. Health Promotion and Disease prevention

Stigma is a complex and powerful social phenomena which marginalises populations. It is a subjective variable, perceived and or experienced phenomena, with related intra- and inter- personal structural or institutional dimensions. It is an important facet of the social impact of many chronic diseases, influencing the course of illness and resulting in an increase in the burden of illness and health disparity. As a feature of many chronic health problems, stigma contributes to the hidden burden of illness. Health-related stigma is typically characterized by social disqualification of individuals and populations who are identified with particular health problems.[6]

As recently highlighted by the World Health Organisation[7], there is a widespread misunderstanding throughout Europe about the nature of epilepsy, its causes and its implications. This results in stigma, prejudice and discrimination, which seriously affect all aspects of the lives of people with epilepsy and their families.

 Recent studies in Italy show that attitudes towards epilepsy are improving but a fairly high proportion of people still believe that epilepsy poses strong limitations to daily living activities.[8] To some extent, the idea that epilepsy is incurable is still a worldwide belief and is in line with the idea that several practitioners still have about epilepsy being a lifetime clinical condition, not susceptible to permanent remission.[9]

 It is submitted that the European Union should lead the way to reduce the stigma that affects epilepsy and indeed many chronic diseases. Member State initiatives are fractured and uncoordinated which can to duplication. ILAE and IBE are umbrella organisations representing member associations in each country of the EU. These organisations work together collectively through ILAE and IBE to share innovative ideas on how best to tackle the stigma associated with epilepsy. However, the organisations cannot work alone. The EU must assist in promoting awareness initiatives that stimulate debate, that educate and that inform. Working together with stakeholders and Member States the EU can tackle one of the huge burdens of chronic diseases that is stigma.

Epilepsy is a highly stigmatized disease and it is imperative that an EU wide strategy educating about the effects of the disease be implemented. A detailed, structured plan to inform and reduce epilepsy stigma is highly necessary starting at EU level and filtering through to the Member States.

People with epilepsy experience serious limitations to their enjoyment of human, economic, social and cultural rights. They have many unmet needs in the areas of civil rights, education, employment, residential and community services, and access to appropriate health care.  Discrimination in access to education is not unusual for people affected by the condition.

If the stigma associated with the disease can be effectively reduced it will lead to a sharp increase in the quality of life for all persons with epilepsy.

Education

Research into the vocational interests of people with epilepsy shows that people with epilepsy are often advised not to undertake their training of choice, because of the suspected consequences of having epilepsy. In many parts of the world people with epilepsy still do not have good prospects of holding a job and building a future for themselves. Several studies in European countries, for instance in Germany and Italy, indicate that of the persons of working age, only 40 to 60% are employed, 15 to 20% are unemployed and 20% retire early from employment.[10] In fact, persons with epilepsy typically have lower employment and education levels, as well as lower socioeconomic status. Many studies have indicated that children with epilepsy who have a seizure in class may be excluded from school, while adults find difficulties with finding a life-partner or employment. In addition, persons with epilepsy have poor health outcomes, including psychological distress, depression, physical injuries such as fractures and burns, and increased mortality[11].

Innovative ways of dealing with chronic disease and the stigma attached to these conditions should be explored. In this regard it is imperative that the EU, its Member States and all relevant stakeholders work side by side.

3. Healthcare

At present, uneven access to healthcare is increasing. There are gaps widening within and between countries and it is vital that they are rapidly addressed. One of the most important factors with regard to access to healthcare is the debate regarding public and private healthcare. More needs to be done to ensure equal access and treatment across the board, especially in this economically harsh climate.

The epilepsy treatment gap, defined as the proportion of people with epilepsy who require treatment but do not receive it, has been proposed as a useful parameter to compare access to and quality of care for epilepsy patients across populations.[12]

In some countries of Europe, epilepsy is not recognised as a brain disorder, and up to 40% of people with this condition may be untreated.[13]

Surveys in the United Kingdom have suggested that health care for people with epilepsy is fragmented and inadequately resourced.[14]

By decreasing the treatment gap and promoting the inclusion of epilepsy care in national and EU wide health care plans, the burden of epilepsy can be significantly reduced.

4. Research

The European Union must close the gap with existing innovation leaders such as the United States, Japan and South Korea. Recent data showing improvements in almost all 27 EU countries in terms of their innovation performance is welcome but it is considered that Europe need to close the consistent gap that exists between world leaders. It is suggested that a greater emphasis on public-private partnerships can be particularly advantageous in closing the gap.

There have been some promising signs of advancement in epilepsy research over the last number of years and, with better funding and coordination, there is scope for more success. Currently, there is no cure for epilepsy. European-wide opinions of how to achieve the next step, of developing and implementing a European wide research strategy.

Better cooperation at EU and Member State level is a prerequisite to achieve research results. Resources must be committed to research initiatives that aim to improve our understanding of chronic diseases. It is crucial that the research community is involved in the drafting of the funding strategies and the identification of specific research needs for chronic diseases. Only in this manner can funding strategies be linked to the necessities of the research community.

5. Information and Information technology

Cost and prevalence studies

Estimates of the prevalence and cost of epilepsy in Europe vary considerably. A recent study by the European Brain Council estimated that 2.6 million people in Europe have epilepsy[15] whereas a WHO/ ILAE/IBE report[16] estimates that 6 million people in Europe suffer from epilepsy. The level of uncertainty of the estimates is also well illustrated in a review from 2001. Kotsopoulos suggests that the direct healthcare cost for epilepsy represents anything between 0.12% and 1.12% of total healthcare expenditure[17]. This uncertainty is also reflected in two separate reports on the cost of brain disorders from the European Brain Council suggesting a decrease in cost per epilepsy patient as well as in total costs for epilepsy in Europe from 2004 to 2010[18]. Since there is no reason to believe that the actual costs have been reduced, the markedly conflicting data are most likely a consequence of methodological differences and shortcomings.

The prevalence and costs of epilepsy in Europe is a research field characterized by considerable knowledge gaps with major un-researched countries and regions, and by conflicting observations in countries where such research has been carried out.

There is an urgent need for a more definitive European-wide study of the prevalence and cost of epilepsy using appropriate and standardized methodology.

Information derived from this study will be essential for decisions on allocation of resources for the provision of adequate and cost-effective epilepsy care across Europe.

6. Roles of Member States and EU and stakeholders

Healthy ageing

The age distribution of the incidence of epileptic seizures and epilepsy is bimodal, with two peaks of frequency: in childhood and in the elderly.[19]

The ILAE IBE European Joint Task Force on Epilepsy welcomes the 2012 European Year on Active and Healthy Ageing and the European Innovation Partnership on Active and Healthy Ageing. The focus on healthy ageing is particularly important at present, but it must run parallel to initiatives focussing on the management of chronic diseases. By focussing more resources to combat chronic diseases the European Union and its Member States will ensure that Europe’s citizens are healthier in the long run.

Epilepsy is a chronic disease and with more focus and attention from the European Union and its partners, we can help to eradicate some of the many burdens that come with this particular condition.


[1] WHO defines Disability-Adjusted Life Year thus, ‘One DALY can be thought of as one lost year of “healthy” life. The sum of these DALYs across the population, or the burden of disease, can be thought of as a measurement of the gap between current health status and an ideal health situation where the entire population lives to an advanced age, free of disease and disability.’

[2] (Suhrcke et al.  2006; Mathers and Loncar 2005) in Tackling Chronic Disease in Europe – Strategies, interventions and challenges, Reinhard Busse, Miriam Bluemel, David Scheller-Kreinsen, Annette Zentner http://www.euro.who.int/__data/assets/pdf_file/0008/96632/E93736.pdf

[3] In summary, one DALY is 1 lost year of healthy life:DALYs = YLLs(Years of Life lost because of premature death) + YLDs (Years of Life lived with Disease) [Burden = Mortality + Disability]

[4] Bringing Epilepsy out of the shadows, Rajendra Kale, BMJ Volume 315, 5 July 1997

[5] Epilepsy in the WHO European Region: Fostering Epilepsy Care in Europe – http://www.ilae.org/visitors/documents/euroreport160510.pdf

[6] Weiss MG, Ramakrishna J. Health-Related Stigma: Rethinking Concepts and Interventions Background Paper Research Workshop on Health-Related Stigma and Discrimination Royal (2004)

[7] Epilepsy in the WHO European Region: Fostering Epilepsy Care in Europe – http://www.ilae.org/visitors/documents/euroreport160510.pdf

[8] Past and Present public knowledge and attitutes toward epilepsy in Italy, Mecarelli et al. Epilepsy and Behaviour 18 (2010) 110-115

[9] Ibid

[10] De Boer H.M., Aldenkamp A.P., Bullivant F., et al,. Hori­zon, the transnational epilepsy training project. Int. Y Adolescent Med. Heal vol 7, 1994

[11] Global disparities in the epilepsy treatment gap: a systematic review, Ana-Claire Meyer a, Tarun Dua b, Juliana Ma c, Shekhar Saxena b & Gretchen Birbeck d http://www.who.int/bulletin/volumes/88/4/09-064147/en/index.html

[12] Kale R. Global Campaign against Epilepsy: the treatment gap. Epilepsia 2002; 43: 31-3 doi: 10.1046/j.1528-1157.43.s.6.13.x pmid: 12190976.

[14] Epilepsy in the WHO European Region: Fostering Epilepsy Care in Europe – http://www.ilae.org/visitors/documents/euroreport160510.pdf

Jacoby A et al. A general practice records audit of the process of care for people with epilepsy. British Journal of General Practice, 1996; 46:595-599.

[17] Kotsopoulos, I., Evers, S., Ament, J., & de Krom, M., (2001). Estimating the cost of epilepsy: an International comparison of epilepsy cost studies. Epilepsia, 42, (5), 634-640.

[18]  (1) Gustavsson, A., Svensson, M., Jacobi, F., Allgulander, C., Alonso, J., Beghi,  E., Dodel, R., Ekman, M., Faravelli, C., Fratiglioni, L., Gannon, B., Hilton Jones, D., Jennum, P., Jordanova, A., Jonsson, L., Karampampa, K., Knapp, M., Kobelt, G., Kurth, T., Lieb, R., Linde, M., Ljungcrantz, C., Maercker, A., Melin, B., Moscarelli, M., Musayev, A., Norwood, F., Preisig, M., Pugliatti, M., Rehm, J., Salvador Carulla, C., Schlehofer, B., Simon, R., Steinhausen, H., Stovner, L., Vallat, J., Van den Bergh, P., van Os, J., Vos, P., Xu, W., Wittchen, H., Jonsson, B., Olesen, J., on behalf of the CDBE2010 study group, (2011).  Cost of disorders of the brain in Europe 2010.  European Neuropsychopharmacology, 21, 718-779.  (2) Andlin-Sobocki, P., Jonsson, B., Wittchen, H-U., & Olesen, J., (2005).  Cost disorders of the brain in Europe.  European Journal of Neurology, 12 (Suppl.1), 1-27.

European Epilepsy Day 2012

The Co-Chairs of the Joint Task Force on Epilepsy, Mike Glynn and Emilio Perucca were in the European Parliament in Strasbourg on the 13th February to mark European Epilepsy Day. Mike And Emilio had various meetings with Members of the European Parliament and spoke directly with Marina Yabbakoudakis MEP, UK; Giancarlo Scotta MEP, Italy; Anna Zaborska MEP, Slovakia; Andras Gyurk MEP, Hungary; Wim van de Camp MEP, Netherlands; Oreste Rossi MEP, Italy; Pavel Poc MEP, Czech Republic; Milan Carbnoch MEP, Czech Republic; Theodoros Skylakakis MEP, Greece; Filip Kaczmarek MEP, Poland; and Nathalie Griesbeck MEP, France.

Mike and Emilio thanked the MEPs for their support of the Written Declaration on Epilepsy which was signed by an overwhelming majority of the European Parliament. The European Commission has responded to the Written Declaration and a copy of that response is available here.

A reception hosted by Gay Mitchell MEP was held in the Winston Churchill building of the European Parliament and a large crowd of MEPs were present. Jerzy Buzek, former President of the European Parliament opened the reception and spoke of the importance of moving the epilepsy agenda forward.

Application for EU Funding

Responsibility for the functioning of the Council of the European Union lies with the Presidency of the Council of the European Union. The Presidency is held on a 6 monthly rotating basis by the national governments of each of the 27 Member States of the European Union. The current EU Presidency is being served by Denmark.

The Presidency operates through a troika system whereby 3 Presidencies collaborate for three terms over an 18 month period. Each Presidency has an opportunity to set the agenda of the European Union over the specified 6 months and in the first 6 months of 2013, Ireland will host the Presidency of the EU. Ireland will work alongside Lithuania and Greece in a troika spanning from January 2012 to June 2013.

The International League Against Epilepsy and the International Bureau for Epilepsy have applied to host a Conference alongside the Irish Presidency of the European Union in March 2013. Direct EU Funding to the amount of €100,000 is available for the event but the opportunity to work alongside the European Union and align objectives is perhaps more valuable for the epilepsy agenda.

The groundwork for this project has been set by the Joint Task Force on Epilepsy, a collaboration between ILAE and IBE. The Joint Task Force is co-chaired by Mike Glynn, IBE President, and Emilio Perucca ILAE Treasurer. The specific objectives of the Conference are:

  • to promote and discuss the opportunities for coordinated, targeted and precise innovative research efforts that would build on the significant gains made by basic and clinical research in the past
  • to seek to address the optimal standards of care for persons with epilepsy which are still unequally distributed in Europe
  • to develop programmes which will raise public awareness of epilepsy and to reduce the stigma associated with the disease (which very often causes more distress and problems than the epilepsy itself) by the organisation of parallel workshop sessions during the conference.

Monselice – Shrine of the seven churches

 

For almost a century, hundreds of residents of Monselice (Veneto region), every February 14th – Valentine’s Day – Jubilee go up to the Shrine of the seven churches to receive a special blessing and a “golden key” that should prevent the rise in children’s’ falling sickness’, ie epilepsy.

Meeting the MEPs

Mike Glynn, Peter Skinner MEP, Gay Mitchell MEP, Ann Little, Liam Aylward MEP

Mike Glynn, Oreste Rossi MEP

Mike Glynn, Pavel Poc MEP, Emilio Perucca

Jerzy Buzek MEP, Gay Mitchell MEP

Emilio Perucca, Milan Cabrnoch MEP, Mike Glynn

Emilio Perucca, Theodoros Skylakakis MEP, Mike Glynn

Gay Mitchell MEP, Mike Glynn, Jerzy Buzek MEP, Wim van de Camp MEP

Norma Mitchell, Anna Zaborska MEP, Gay Mitchell MEP, Mike Glynn, Marian Harkin MEP, Sean Kelly MEP, Ann Little

Sean Kelly MEP, Gay Mitchell MEP, Mike Glynn, Pat the Cope Gallagher MEP, Emilio Perucca

 

Emilio Perucca, Oreste Rossi MEP