Health, ageing and public policies in European Union

Directorate-General for Research

WORKING PAPER

HEALTH, AGEING

AND PUBLIC POLICY

Social Affairs Series

Health, Ageing and Public Policies

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The original working paper is available in EN. Author: José Antonio Camacho Conde Supervisor: Lothar Bauer Division for Employment and Social Affairs Directorate-General for Research Tel.: + (352) 4300 22575 The opinions expressed is this working paper are those of the author and do not necessarily represent the official position of the European Parliament. Manuscript completed in June de 2001.


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CONTENTS

1. INTRODUCTION………………..……………...……………………..........................................6

2. DEVELOPMENT OF PUBLIC HEALTH POLICY IN THE COMMUNITY ……...............7

3. LAW CONCERNED.......................................................................................................................9 3.1.Decisions.........................................................................................................................................9 3.2.Resolutions....................................................................................................................................11

4. CHALLENGES FOR AN EUROPEAN AGEING.…………..................................................13

4.1. Health and Social Service Systems..............................................................................................13 4.2. Social Protection...........................................................................................................................14 4.3. Feminization of Ageing................................................................................................................15 4.4. The Challenge of Dementia..........................................................................................................16 4.5. Prevention and Care......................................................................................................................17 4.6. Violence and Abuse......................................................................................................................17 5. PUBLIC POLICIES IN AGEING...............................................................................................18 5.1. Intersectorial Policy Objectives....................................................................................................18 5.2. Policies for the Future...................................................................................................................22 6. PROGRAMMES AND PROJECTS IN EUROPEAN COMMUNITY....................................28 6.1. Health Programmes......................................................................................................................28 6.1.1. Health Programme 1999............................................................................................................29 6.1.2. Health Programme 2000............................................................................................................30 6.1.3. Health Programme 2001............................................................................................................31 6.2. Elderly Programmes.....................................................................................................................31 6.3. Health and Ageing Projects: Alzheimer's Disease.......................................................................32 6.4. European Crisis in the Financing of Alzheimer's Projects...........................................................33

7. CONCLUSION………...…………..…………………………….................................................34

BIBLIOGRAPHY...…………………………..……………………….............................................35

ANNEXES …..…………….………………………………………..................................................38


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Annex I: Decision No 372/1999/EC of the European Parliament and of the Council of 8 February 1999 adopting a programme of Community action on injury prevention in the framework for action in the field of public health (1999 to 2003).........................................................................................39 Annex II: Decision No 1295/1999/EC of the European Parliament and of the Council of 2 April 1999 adopting a programme of Community action on rare diseases within the framework for action in the field of public health (1999 to 2003)..............................................................................44 Annex III: Decision No 521/2001/EC of the European Parliament and of the Council of 26 February 2001 extending certain programmes of Community action in the field of public health adopted by Decisions No 645/96/EC, No 646/96/EC, No 647/96/EC, No 102/97/EC, No 1400/97/EC and No 1296/1999/EC and amending those Decisions....................................................................................49 Annex IV: Council Resolution of 8 June 1999 on the future Community action in the field of public health...................................................................................................................................................57 Annex V: Council resolution of 18 November 1999 on the promotion of mental health...................59 Annex VI: European Parliament Resolution of 17 April 1996 on Alzheimer's disease and the prevention of disorders of the cognitive functions in the elderly........................................................61 Annex VII: European Parliament Resolution of 11/03/98 on Alzheimer's disease............................63


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1. INTRODUCTION The EU Treaty provided a major impetus by introducing a specific article on public health into the EC Treaty - Article 129 (now renumbered Article 152). However, since most power in this sector remains in the hands of the Member States, the Community's role is subsidiary and mainly involves supporting the efforts of the Member States and helping them formulate and implement coordinated objectives and strategies. The Treaty of Amsterdam is designed to improve matters by amending the wording of Article 152 (ex Article 129) of the EC Treaty. Originally the Treaty of Rome did not contain any formal legal basis for measures in the field of public health. However, since 1997, a Council of the Ministers of Health began to meet on an occasional basis. These meetings resulted in acts such as "decisions of the Member States meeting within the Council" or non-binding resolutions. Following the signature of the Single European Act, instruments of this kind - whose legal impact is sometimes uncertain - began to proliferate. Public health was finally enshrined in the Treaty on European Union with the insertion of a "Public Health" title, which opened the way to formal cooperation between Member States in this area. In parallel, Article 3 raised health protection to the rank of a Community objective. Since then Community measures have focused on horizontal initiatives providing for information, education, surveillance and training in the field of health, the drafting by the European Commission of reports on the state of health in the European Community and the integration of health protection requirements into the Community policies. Moreover, global multiannual programmes have been mounted in priority areas such as cancer, drug addiction, AIDS and transmissible diseases. Community action has also assumed other forms, for example in the fields of transmissible diseases, blood and tobacco and - in the context of completing the Single Market - through the adoption of legislation on veterinary and phytosanitary controls, or again, in the field of biotechnology, through the funding of research work. As far as general health trends are concerned, it would appear that the population of the EU enjoys excellent health. Nevertheless, the following serious problems remain: - high levels of premature death (one fifth of all deaths occur before the age of 65) from disorders related to particular lifestyles, such as alcohol abuse, drug consumption and smoking; - new risk factors linked to the emergence of new diseases, e.g. variant CJD and diseases transmitted from the food chain; - the reappearance of infectious diseases such as tuberculosis, exacerbated by drug resistance; - an increase in age-related diseases (e.g., Alzheimer's disease). In the next 20 years Europe will be one of the areas of the world with the most pronounced ageing trends. In 2025, the share of the above 60 age group in Europe and Japan will be around 30% compared to 255 in North America. Projections show also that others countries, like China will be confronted with similar demographic ageing trends 20 years later. Finally, population growth in North America will continue to be relatively strong and the ageing trend will remain weaker than in Europe.


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Europe is entering into period of accelerating population ageing. However, the existing evidence shows that the regions of the EU are unevenly affected by demographic trends. This asymetrical demographic impact adds to an already diversified regional environment. The phenomenon will extend to the majority of EU regions, which will see their population stagnating or declining before 2015. The younger generation, the 0-24 age group, representing 31% of population in 1995, will be reduced to 27% in 2015, a decline of 11 millions. In some regions in Germany, Italy, Spain and France the younger generation will represent less than 25 per cent. The retired generation (65+) will increase, significantly and unevenly, throughout Europe. In some regions of France, Italy and Spain the 80+ generation will represent between 7 and 9 per cent of population (compared with 3,9 per cent as an average 1995). In most cases the speed of ageing process will increase after 2010. This will become clearer in the 5 year period between 2010. The number of people aged 65 and over will then increase by as much as 19% (Finland) or 17% (Netherlands), against an average of 7,6% 7 out of 15 countries will have increases over 10%. Ageing is clearly a major public policy issue in Europe. The growing acceptance of a need to protect the rights and freedoms of elderly people and to secure both their full inclusion within society and a right to equality of opportunity is manifest in recent legislative and constitutional developments within a number of Member States. In addition, the Commission adopted a Communication on "Towards a Europe for all Ages - Promoting Prosperity and Intergenerational Solidarity"1 in May 1999 which sets out the implications of ageing of population in employment, social protection, health and social services and proposes a strategy for effective policy responses in these fields, based on strengthening co-operation amongst all actors and solidarity and equity between generations. The adoption of the Amsterdam Treaty and Agenda 2000 has provided both a platform and further political momentum for the strengthening of age policies at European level. 2. DEVELOPMENT OF PUBLIC HEALTH POLICY IN THE COMMUNITY The Community can now adopt measures aimed at ensuring (rather than merely contributing to) a high level of human health protection. To stimulate a broad debate on the overall direction of the future Community public health policy in order to be able to put forward concrete proposals once the Treaty of Amsterdam has been ratified. The new Article 152 (ex Article 129) of the EC Treaty has a wider scope than before. Among the areas of cooperation between Member States, the new Article lists not only diseases and major health scourges but also, more generally, all causes of danger to human health, as well as the general objective of improving health. The Council may also adopt measures setting high quality and safety standards for organs and substances of human origin, blood and blood derivatives. Veterinary and plant-health measures 1 Commission of the European Communities. Communication from the Commission to the UN International Year of Older Persons. Towards a Europe for All Ages: Promoting Prosperity and Interganerational Solidarity, Brussels 21.05.1999 COM(1999)


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directly aimed at protecting public health are now adopted under the codecision procedure . This is a new departure, as the European Parliament previously only had a right to be consulted on the adoption of health measures linked to agriculture. The Community strategy on public health is in need of fundamental revision in order to be able to cope with a number of major developments, such as new health threats, the increasing pressures on health systems, the enlargement of the Community and the new provisions of the Treaty of Amsterdam. In recent decades, the health of the Community population has improved dramatically, as shown by the fact that life expectancy at birth has risen by five years since 1970. While there is every reason to welcome this development, it must not be allowed to hide the fact that there are still serious health problems in the Community:

• one person in every five still dies prematurely (before the age of 65) from avoidable diseases, particularly relating to lifestyle, or as a result of accidents;

• new risks to health are emerging, especially from communicable diseases; • there are still wide variations in health status from one socio-economic stratum to

another; • the ageing of the population is giving rise to a substantial increase in diseases related to

old age, such as Alzheimer's disease. Community public health policy must take account of both the prospects of enlargement and the world context. Of course, the cooperation with international organisations, such as the World Health Organisation (WHO), is also necessary to address threats to health at the global level. Although health issues have featured in the Treaties since the beginnings of the construction of Europe, it is only since the ratification of the Treaty of Maastricht that the Community has been able to implement a genuine public health strategy: five specific action programmes (cancer, AIDS, drug dependence, health promotion and health monitoring) have been adopted and three others proposed (rare diseases, injuries, pollution-related diseases) alongside other initiatives (reports on the state of health in the European Community, recommendations on the safety of blood products, etc.). In addition, a number of other Community policies have an impact on health. The Commission has drawn the following conclusions from the experience gained in implementing the 1993 framework of action:

• the approach involving distinct action programmes has made it possible to overcome the differences between Member States as regards the order of priorities;

• on the other hand, it has led in practice to a considerable administrative burden, a lack of flexibility, a dispersion of financial resources and difficulties of coordination between the programmes.

In the last two years, several developments, such as the "mad cow" crisis, have contributed to a new awareness of the importance of health policy at Community level. The extension of the legal basis of the Community's public health activities in the Amsterdam Treaty reflects this growing interest.


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In order to meet this demand, the Commission considers that the future Community policy should comprise three strands of action:

• improving information for the development of public health: building on the activities and outputs of the programme on health monitoring, a structured and comprehensive Community system should be developed for collecting, analysing and disseminating information on general trends in the population's health status and health determinants and on developments concerning health systems;

• reacting rapidly to threats to health: this involves creating Community surveillance, early warning and rapid reaction mechanisms to meet the threats to health which might arise at any time (the proposal to create a European network for communicable disease surveillance and control is already contributing to this objective);

• tackling health determinants through health promotion and disease prevention: this third strand comprises actions aimed at strengthening individuals' ability to improve their health, including social, economic and environmental conditions, and the many activities linked to prevention (vaccination, screening, etc.).

Implementation of these three strands would facilitate compliance with the provisions of the Treaty regarding the incorporation of health requirements in all Community policies. 3. LAW CONCERNED 3.1. Decisions - Decision No 645/96/EC of European Parliament and of Council of 29 March 1996 adopting a programme of Community action on health promotion, information, education and training within the framework for action in the field of public (1996 to 2000)2 The objetive of this programme was to contribute towards ensuring a high level of health protection and comprised actions aimed at: encouraging the health promotion approach in Member States health policies by lending support to various cooperation measures (exchanges of experience, pilot projects, networks, etc.); encouraging the adoption of healthly lifestyles and behaviour; promoting awareness of risk factors and health-enhancing aspects; encouraging intersectorial and multidisciplinary approaches to health promotion, taking account of the socio-economic factors and the physical environment necessary for the health of individual and the community, especially for disadvantaged groups. - Decision No 646/96/EC of the European Parliament and of the Council of 29 March 1996 adopting an action plan to combat cancer within the framework for action in the field of public health (1996 to 2000)3 - Decision No 647/96/EC of the European Parliament and of the Council of 29 March 1996 adopting a programme of Community action on the prevention of AIDS and certain other communicable diseases within the framework for action in the field of public health (1996 to 2000)4

2 OJL 95, 16.4.1996, p.1. 3 OJ L 95, 16.4.1996, p. 9. 4 OJL 95, 16.4.1996, p. 16.


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- Decision No 1400/97/EC of the European Parliament and the Council of 30 June 1997 adopting a programme of Community action on health monitoring within the framework for action in the field of public health (1997 to 2001)5. - Decision No 372/1999/EC of the European Parliament and of the Council of 8 February 1999 adopting a programme of Community action on injury prevention in the framework for action in the field of public health (1999 to 2003)6. A programme of Community action on injury prevention, hereinafter referre to as "this programme", is hereby adopted for the period from 1 January 1999 to 31 December 2003 in the framework for action in the field of public health. The aim of this programme shall be to contribute to public health activities which seek to reduce the incidence of injures, particularly injuries caused by home and leisure accidents, by promoting: the epidemiological monitoring of injuries by means of a Community system for the collection of data and the exchange of information on injuries based on strengthening and improving on the achievements of the former EHLASS system; information exchanges on the use of those data to contibute to the definition of priorities and better prevention strategies. - Decision No 1295/1999/EC of the European Parliament and of the Council of 29 April 1999 adopting a programme of Community action on rare diseases within the framework for action in the field of public health (1999 to 2003)7. A programme of Community action on rare diseases, incluiding genetic diseases, hereinafter referred to as "this programme", is adopted for the period from 1 January 1999 to 31 December 2003 within the framework for action in the field of public health. The aim of this programme is to contribute, in coordination with other Community measures, towards ensuring a high level of health protection in relation to rare diseases by improving knowledge, for example by promoting the setting-up of a coherent and complementary European information network on rare diseases, and facilitating access to information about these diseases, in particular for health professionals, researchers and those affected directly or indirectly by these diseases, by encouraging and strengthening transnational cooperation between voluntary and professional support groups for those concerned, and by ensuring optimum handling of clusters and by promoting the surveillance of rare diseases. - Decision No 1296/1999/EC of the European Parliament and of the Council of 29 April 1999 adopting a programme of Community action on pollution-related diseases in the context of the framework for action in the field of public health (1999 to 2001)8. - Decision No 521/2001/EC of the European Parliament and of the Council of 26 February 2001 extending certain programmes of Community action in the field of public health adopted by Decisions No 645/96/EC, No 646/96/EC, No 647/96/EC, No 102/97/EC, No 1400/97/EC and No 1296/1999/EC and amending those Decisions9. A number of programmes of Community action within the framework for action in the field of public health expired at the end of 2000: 5 OJL 193, 22.7.1997, p. 1. 6 C.f. Annex I: Decision No 372/1999/EC (OJ L 46, 20.2.1999, p. 1.) 7 C.f. Annex II: Decision No 1295/1999/EC (OJ L 155, 22.6.1999, p. 1.) 8 OJ L 155, 22.6.1999, p. 7. 9 Annex III: Decision No 521/2001/EC (OJ L 079, 17.03.2001, p. 1.)


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- the programme of Community action on health promotion, information, education and training, adopted by Decision No 645/96/EC of the European Parliament and of the Council10, - the action plan to combat cancer, adopted by Decision No 646/96/EC of the European Parliament and of the Council11, - the programme of Community action on the prevention of AIDS and certain other communicable diseases, adopted by Decision No 647/96/EC of the European Parliament and of the Council12, - the programme of Community action on the prevention of drug dependence, adopted by Decision No 102/97/EC of the European Parliament and of the Council13. The following expire at the end of 2001: - the programme of Community action on health monitoring, adopted by Decision No 1400/97/EC of the European Parliament and of the Council14, - the programme of Community action on pollution-related diseases, adopted by Decision No 1296/1999/EC of the European Parliament and of the Council15. In its Resolution of 8 June 1999 on the future Community action in the field of public health16, the Council stressed the need for continuity of Community action in the field of public health in the light of the perspective of expiry of existing programmes. In its Communication of 15 April 1998 to the European Parliament, the Council, the Economic and Social Committee and the Committee of the Regions on the development of public health policy in the European Community, the Commission indicated that existing public health programmes will be coming to an end from the end of year 2000 onwards and stressed that there is a need to ensure that there is no vacuum in Community policy in this important field. The subsequent debate on that communication resulted in a consensus among the Community institutions in favour of developing a new health strategy with an overall public health programme of action. While a new strategy and proposals for a new, overall, public health programme are being considered, the present programmes in the public health area should be extended until the end of 2002 in order to avoid any interruption in the Community action concerned. For the programmes which are due to expire on 31 December 2000, provision should be made for a two-year extension over two successive years for the period from 1 January 2001 to 31 December 2001 and for the period from 1 January 2002 to 31 December 2002, respectively, and for the annual division of the financial framework implementing the programmes in question. - Proposal for a decision of the European Parliament and of the Council adopting a programme of Community action in the field of public health (2001-2006). The overall aim of the public health programme should be to make a contribution towards the attainment of a high level of health protection by directing action towards improving public 10 OJ L 95, 16.4.1996, p. 1. 11 OJ L 95, 16.4.1996, p. 9. 12 OJ L 95, 16.4.1996, p. 16. 13 OJ L 19, 22.1.1997, p. 25. 14 OJ L 193, 22.7.1997, p. 1. 15 OJ L 155, 22.6.1999, p. 7. 16 OJ C 200, 15.7.1999, p. 1.


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health, preventing human illness and diseases, and obviating sources of danger to health. Action should be guided by the need to prevent premature death, increase life expectancy without disability or sickness, promote quality of life and physical and mental well-being, and minimise the economic and social consequences of ill health, thus reducing health inequalities. Achieving this aim, and the general objectives of the programme requires effective cooperation of the Member States, their full commitment in the implementation of Community actions, and the involvement of actors in the health field as well as the public at large. In accordance with the principles of subsidiarity and proportionality set out in Article 5 of the Treaty, Community action on matters which do not fall within the exclusive competence of the Community, such as public health, should be undertaken only if and insofar as, by reason of its scale or effects, its objective can be better achieved by the Community. The objectives of the programme cannot be sufficiently accomplished by the Member States because of the complexity, transnational character and lack of complete control at Member State level over the factors affecting health status and health systems. The programme will enable the Community to contribute towards fulfilling its Treaty obligations in the field of public health while fully respecting the responsibilities of the Member States for the organisation and delivery of health services and health care. This Decision does not go beyond what is necessary to achieve those objectives. The measures under the programme underpin the health strategy of the Community and will yield Community added value by responding to needs in health policy and health systems arising out of conditions and structures established through Community action in other fields, by addressing new developments, new threats and new problems for which the Community would be in a better position to act to protect its people, by bringing together activities undertaken in relative isolation and with limited impact at national level and by complementing them in order to achieve positive results for the people of the Community, and by contributing to the strengthening of solidarity and cohesion in the Community. The programme should last six years in order to allow sufficient time to implement measures to achieve its objectives. It is essential that the Commission should ensure implementation of the programme in close cooperation with the Member States. 3.2 Resolutions - Council Resolution of 8 June 1999 on future Community action in the field of public health17 The Council reiterates its position concerning future action in the health field and emphasises the need for transparency in order to promote better knowledge and greater involvement on the part of citizens. The Commission was preparing a series of documents relating to the public health sector:

• a communication; • a proposal for a decision on an action plan;

a proposal for a decision extending the Community action programmes due to end in 2000. - Council resolution of 18 November 1999 on the promoting of mental health18. 17 C.f. Annex IV: Council Resolution of 8 June 1999 on future Community action in the field of public health (OJ C 200, 15.07.1999)


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- Council Resolution of 18 November 1999 on ensuring health protection in all Community policies and activities19. - European Parliament Resolution of 17 April 1996 on Alzheimer's disease and the prevention of disorders of the cognitive functions in the elderly20. - European Parliament Resolution of 11 March 1998 on Alzheimer's disease21. 4. CHALLENGES OF AN EUROPEAN AGEING 4.1. Health and Social Service Systems The state of health in the European Union is better than ever before. This is due to spectacular progress made over the second half of this century in terms of medical research, health services provision and living conditions. However, older people require more, and substantiabilly different, health and social services than younger people. The central challenge of the policy makers is ensure that the future health care policies will provide an adequate and cost effective reponse to the changes brought about by demographic trends. The rising cost of health and care system and the need for structural reform constitute key issues for the present and the future of social protection sytems. Today the main focus of discussion on health and care policies can be resumed as follows: - how to balance quality and costs; - how to reduce persistent gaps in the equity of health care systems, improving health conditions among the most vulnerable age and income groups. The majority of older old age group (over 80 years) needing permanent assistance and care are attended to at home by their families, while the proportion of profesional services provided is still rather low. In the future, families will be less and less able of assuming the increasing care tasks. The role of both formal and informal carers will be of incresing importance. More professional services like home nursing, old age assistance, old age apartments will be needed. The role of civil society in providing health and care services is also of particular importance. Older people require more, and substantially different, health and care services than younger people. The following factors are typical of the morbility of older populations: - Higher incidence: older persons tend to fall ill more frequently. - Old age diseasescertain diseases like cancer, cardiovascular disease, physical disabilities and mental disorders are found primarily among the old age group.

18 Annex V: Council resolution of 18 November 1999 on the promoting of mental health (OJ C 086, 24.03.2000, p. 1.) 19 OJ C 086, 24.03.2000, p. 3. 20 C.f. Annex VI: European Parliament Resolution of 17 April 1996 on Alzheimer's disease and the prevention of disorders of the cognitive functions in the elderly. 21 C.f. Annex VII: European Parliament Resolution of 11 March 1998 on Alzheimer's disease.


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- Chronicity: older people generally take a longer time to recover from desease and there is a higher risk of diseases turning into chronic conditions. Dementia is a typical old age disease for which profesional care services are often needed. - Multi-morbility: older persons run a higher risk of suffering from several diseases and impairments at the same time. Concerning the future, although predictions concerning the longer term remain highly speculative, the following developments may be expected for the next 10-15 years: - due to advances made in modern medicine, mortality rates will tend to decrease cannot be predicted - the advances in medicine might have rather limited effects on chronic diseases and physical impairments among the very old age group. - the increasing importance of carers Statistics show that 30% of people over 65 have special needs. This percentage increases significantly after 75. The widely quoted survey in Germany (Schneekloth and Potthoff, 1993) shows that 72% of main carers of those in need nursing care (at all ages) are not employed, 5% are working at a low level, 7% are employed part time and 10% are in full employment. However, among carers aged 18-64, two thirds were in employment when caring began; subsequently, at least a quarter of these had reduced their working hours. Health systems need to take a life course perspective that focuses on health promotion, disease prevention, equitable access to primary care and a balanced approach to long-term care. Health and social services need to be integrated, equitable and cost-effective. Long-term care includes both informal and formal support systems. The latter may include a broad range of community and public health, primary care, palliative care and rehabilitation services as well as institutional care in supportive housing, nursing homes, hospices, etc. and treatments to halt or reserve the course of disease and disability. Mental health services should be an integral part of long-term care. The under-diagnosis of mental illness, particularly of depression in older people is increasingly recognized. One of the greatest challenges in health policy is to strike a balance among support for self-care (older people looking after themselves), informal support (family members and friends helping to care for older people) and formal care (health and social services). Family members (mostly women) and neighbours provide the bulk of support and care to older adults that need assistance. Some policy makers fear that providing formal care services will lessen the involvement of families. The research shows that this is not the case. When appropriate formal services are provided, informal care remains the key important partner (WHO, 1999). 4.2. Social Protection In all Member States, families provide the majority of support for older people who require help. They are increasingly called on to develop mechanisms that provide social protection for older people who are unable to earn a living are alone and vulnerable. Social protection


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measures can include old age pensions, inkind services, occupational pensions schemes, mandated contribution programmes, savings incentives programmes, compulsory savings funds and disability, health and unemployment insurance programmes. The operational and financial structures of publicly funded social protection sytems were established decades ago. However, the basic needs to wich they respond remain important. The economic and social conditions under which they operate have changed and will keep changing over the next years. Social protection systems will need to be adapted to: - The changing nature of work and the need to improve flexibility but also maintain security; - The change in gender balance in working life and the growing importance of gender issues both at work and the social protection; - The implications of demographic change on dependency ratios and the need to expand activity rates and employment opportunities; The increasing need for co-ordination within the European Union. Increasing the number of people in work can have the effect of stablilising or even reducing the dependency ratios of elderly, despite the increasing age of population. The decline of working age population over the next decades may also contribute in fighting unemployment, if the appropriate policy adjustments take place in time. Finally, informal intergenerational solidarity may also play an increasing role. In considering social protection reforms, policy markers should take into account all these dimensions. What is needes is a good balance between long-term financial sustainability, intergenerational solidarity and equity between generations. 4.3 Feminization of Ageing Women live longer than men in almost all areas of the world. The variation between male and female life expectancy in the European Union has considerable consequences for old people. In the 60-64 year age group there are roughly the same numbers of men and women but increasing age, the imbalance between the sexes increases so that in the 80 to 84 year old group there are two women to every man and in the 90 to 94 year old group the ratio is three to one. The fact that there are many more elderly (and particularly very elderly) women in the population of the European Union has significant implications for care, since elderly women tend to suffer higher levels of disability than men of the same age (Martin, Meltzer & Elliot, 1988). Elderly women are more likely to live alone, more likely to have low incomes and more likely to be widowed than men (Dooghe, 1993). For example , in the Eastern European countries in economic transition over 70 percent of women age 70 and over are widows (Botev, 1999). These cumulative disadvantages mean that women are more likely than men to be poor and suffer social isolation in older age. Women's traditional role as family caregivers may also contribute to their increased poverty and ill health in older age. Some women are forced to give up paid employment to carry out their caregiving responsabilities. Others never have access to paid employment because they work full-time in unpaid caregiving roles, looking after children, older parents, spouses who are ill and grandchildren. Thus, the provision of family care is often achieved at the detriment of female caregiver's economic security and good health in later life.


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4.4. The Challenge of Dementia It appears that the number of old people affected by mental deterioration is increasing because the drop in mortality among the older elderly. As yet, there are no pharmacological treatments for the various forms of dementia, but the research in this field is progressing. Research in many countries shows that most of care of elderly people with dementia is undertaken by families and dementia represents perhaps the greatest source of stress for informal carers. Between 1990 and 2010, the number of dementia cases in the more developed countries is projected to increase from 7.4 million to 10.2 (a 37% increase), the elderly population (aged 65+) from 143 million to 185 million (a 30% increase) and the total population in these countries is projected to increase from 1,143 million to 1,213 million (a 6% increase). Because of the lack of prevalence data from the less developed countries, it is difficult to make projections of the future number of dementia cases. However, these countries are also ageing rapidly and are therefore expected to show an increase in dementia cases. Between 1990 and 2010 the number of people aged 65 or over in the less developed countries is projected to increase from 183 million to 325 million (a 78% increase). "In the mid 1990s the European Union's over 65 population represented about 15% of the population. Given the demographics of the post-war generation boom, the situation will only intensify. By 2020 the over 65s will make up more than 20% of the total population22." The prevalence of Alzheimer's disease and other kinds of dementia is difficult to establish because many cases go undiagnosed. It is estimated, however, that as of the year 2000, approximately eight million people among European Union Member States will have Alzheimer's disease, according to Alzheimer Europe. Since Alzheimer's accounts for only half the cases of dementia among people over 65 years of age, total estimates for dementia in Europe are closer to 16 million. It is estimated that Alzheimer's disease alone strikes 1 in 20 over age 65, or 5 percent of the population. Taken together, dementia affects more than one-quarter aged 85 and over and a third to a half of those aged 90 and over. The incidence of all dementias rises with age, nearly doubling every five years between the ages of 60 and 95, according to the 1991 EURODEM study of dementia in Europe (Hofman 1991). In the most recent EURODEM analysis, the study samples showed an incidence rate of 2.5 per 1,000 person-years at 65 years of age, advancing to 85.6 for those 90 years of age and older (Launer 1999). As the population ages and people live longer, the prevalence of Alzheimer's disease and other dementias is destined to grow. In 1990,older people comprised 15 percent of the population in Italy and Germany. By 2020, that percentage is projected to increase to nearly one-quarter of the population, 22.5 percent in Germany and 23.6 percent in Italy (IBRD World Population). The situation is further complicated by a projected decline in the working age population. The data clearly indicates differences by country in the proportion of the elderly in the population, ranging from 4.6 percent in Ireland to 7.2 percent in Germany and 8.0 percent in Sweden. For all countries there will be an increase in absolute numbers of elderly. The most rapid increases are expected in Italy, Luxembourg and The Netherlands, where the 75+ population is projected to increase by two-thirds over the next two decades. The most rapid growth will take place in the 80+ group. Since women outlive men, a disproportionate part of these elderly will be women. (Rasmussen, 1999).

22 Eurolink Age 1995


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Given the demographics, it is clear that each country is facing monumental costs for support services and institutional care, and loss of productivity from those who bear the burden of care in the home, primarily women. In most countries, eighty percent of Alzheimer's sufferers are cared for by unpaid, informal carers across most countries. However, these traditional support systems are severely challenged because of changing family patterns, and the declining ratio between older persons and available younger family carers. The prevailing trend is to shift responsibilities from public support policies back to the families, responsibilities for which families are unprepared (Rasmussen, 1999). Dementia is a 'rising tide' and a 'neglected problem' at the same time" (Hofman 1991). 4.5. Prevention and care Health has proved to be highly valued in different European population surveys. Maintaining the abilities of older people by preventing threats to health, or even challenging the ageing process itself, should be of fundamental concern. It is essential to develop strategies for prevention and early diagnosis that are based on understanding the process of ageing from a physiological as well as psychosocial perspective. The promotion of health is a great challenge for policy. One of myths of ageing is that it is too late to adopt healthly lifestyle behaviours in older age. On the contrary, engaging in appropiate physical activity, healthly eating, not smoking and using alcohol and medications wisely in older age can prevent disease and functional decline, extend longetivity and enhance one's quality of life. In particular, it is important to remember that many carers will themselves be elderly and therefore subject to the same health problems as elderly people in general. Many studies have testified to the levels of stress experienced by informal carers as a result of looking after elderly relatives and has Evers has observed that "stress perceived" in matters of care is strongly shaped what is seen as "justified" or normal by carers. The same "objective stress" is felt very differently depending on the self-images of carers and what they perceive as their rights and duties, those of their spouses and likewise as the reponsabilities of the Welfare State (Evers, 1992). 4.6. Violence and Abuse Older people are increasingly at risk for violence in times of war and conflict. In peacetime, older people who are frail or live alone may be particularly vulnerable to crimes commited by strangers such theft, assault and break-and-enter. But the most common form of violence against older women) is "elder abuse" committed by family members or others (such as institutional caregivers) that are well known to the victims. According to the International Network for the Prevention of Elder Abuse, elder abuse is "a single or repeated act, or lack of appropriate action occurring within any realtionship where there is a expectation of trust which causes harm or distress to an older person". It includes phsysical, sexual, psychological and financial abuse as well as neglect, and is notoriously under-reported in all cultures. It is a violation of human rights and a significant cause of injury, illness, lost productivity, isolation and despair. Domestic and societal violence against older people is an issue for justicie, public health and social development. Sustained efforts to increase public awareness of the problem and shift values that perpetuate gender inequities and ageist attitudes are also required.


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5. PUBLIC POLICIES IN AGEING The ageing of population is a global phenomenon that demands international, national, regional and local action. In an increasingly connected world, failure to deal with the demographic imperative and rapid changes in disease patterns in a rational way in any part of the world will have socioeconomic and political consequences everywhere. A policy framework for active ageing is guided by the United Nations Principles for Older People23. These are independence, participation, care, self-fulfillment and dignity. Policy action addressing the determinants of active ageing is required in three areas: - Health and independence. When the risk factors (both environmental and behavioural) for chronic diseases and functional decline are kept low and the protective factors are kept high, people enjoy both a longer quantity and quality of life. Older people will remain healthly and able to manage their own lives. Fewer older adults need costly medical treatment and care services. - Productivity. Older people will continue to make a productive contribution to society in both paid and unpaid activities when labour market, employment, education, health and social policies and programmes support their full participation in socioeconomic, cultural and spiritual activities, according to their capacities, needs and preferences. - Protection. When policies and programmes address the health, social, financial and physical security needs and rights of older people, older people are ensured of protection, dignity and care in the event that they are no longer able to support and protect themselves. Families are supported in their efforts to care for older loved ones. 5.1 Intersectoral Policy Objectives Attaining the goal of active ageing will require action in a variety of sectors, including health, social services, education, employment and labour, finance, social security, housing, transportation, justice and rural and urban development. All policies need to support intergenerational solidarity and include specific targets to reduce inequities between women and men and among différent sub-groups within the older population. Particular attention needs to be paid to, older people who are poor and marginalized, and those who live in rural areas. The World Health Organization suggests that we can afford to get old if countries, regions and international organizations enact "active ageing" polices and programmes that enhance the health, independence and productivity of older citizens. The time to plan and to act is now. In all countries, but in developing countries in particular, measures to help older people remain healthy and economically active are a necessity, not a luxury. The WHO has exposed the next Key Policy Proposals:

23 The United Nations General Assembly adopted these Principles for Older Persons on 16th December 1991 (Resolution No.46/91).


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1. Reduce the prevalence of risk factors associated with major diseases and increase the prevalence of factors that protect health and well-being through-out the life course. • Develop culturally-appropriate, population-based guidelines for physical activity for older men and women. Provide accessible, pleasant and affordable opportunities to be physically active (e.g., safe walking areas and parks) and support peer leaders and groups that promote regular, moderate physical activity for older people. • Develop culturally-appropriate, population-based guidelines for healthy eating for older men and women that can be used as education and policy tools. Support improved diets and healthy weights in older age through the provision of information (including information specific to the nutrition needs of older people), healthy food policies and interventions to improve oral health among older people. • Take comprehensive action at local, national and international levels to control the marketing and use of tobacco products and provide older people with help to quit smoking. • Determine the extent of misuse of alcohol, medications and other drugs by older people and put practices and policies in place to reduce misuse and inappropriate prescribing practices. • Provide incentives and training for health and social service professionals to counsel and guide older people in positive self-care and healthy lifestyle practices. • Reduce risk for social isolation by supporting community empowerment and mutual aid groups, traditional societies, peer outreach, neighbourhood visiting and family caregivers. • Capitalize on the strengths and abilities of older people while helping thern build self-efficacy and confidence, as well as coping and realistic goal-setting skills. • Recognize and support the importance of mental health and spirituality in older age. • Include older people in prevention and education efforts to reduce the spread of HIV/AIDS. 2. Develop health and social service systents that emphasize health promotion, disease prevention and the provision of cost-effective, equitable and dignified long-term care. • Train health and social service workers in enabling models of primary health care and long-terrn care that recognize the strengths and contributions of older people. • Eliminate age discrimination in health and social service systems. • Reduce inequities in access to primary health care and long-term care in rural and isolated areas, through the use of both high-tech (e.g., telemedicine) and low-tech solutions (e.g., support to community-based outreach programmes). • Reduce inequities in access to care among older people who are poor by reducing or eliminating user fees and/or providing equitable insurance schemes for care. • Improve the coordination of primary health care and social services.


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• Provide a comprehensive approach to long-term care that stimulates collaboration between the public and private sectors and involves all levels of government, civil society and the not-for-profit sector. Support informal caregivers through initiatives such as training, respite care, pension credits, financial subsidies and home care nursing services. • Ensure high quality standards and stimulating environments in residential care facilities. Provide needed services to care for older people with dementia and other mental health problems as well as physical problems. • Ensure that all people have a right to death with dignity and one which respects their cultural values. • Endorse policies which enable people whenever possible to die in a place they themselves decide, surrounded by people of their own choosing and as free from distress and pain as possible. • Support older healers who are knowledge-able about traditional and complementary medicines and encourage their roles as teachers. 3. Prevent and reduce the burden of excess disabilities, especially in marginalized populations. • Set gender specific targets for improvements in health status among older people and in the reduction of disabilities and premature mortality. • Create "age-friendly" standards and environments that help prevent the onset or worsening of disabilities. • Support the continuing independence of people with disabilities by assisting with changes in the environment, providing rehabilitation services and/or providing effective assistive devices (eg., corrective eyeglasses). • Prevent injuries by protecting older pedestrians in traffic, making walking safe, implementing fall prevention programmes, eliminating hazards in the home and providing safety advice. • Make effective, cost-efficient treatments that reduce disabilities ( such as cataract removal and hip replacements) more accessible to older people with low incomes. • Increase affordable access to essential safe medications among older people who need them but cannot afford them. • Encourage the development of a range of housing options for older people that eliminate barriers to independence and encourage full participation in community and family life. 4. Enable the active parficipation of older people in aff aspects of society. • Include older people in the planning, implementation and evaluation of social development initiatives, efforts to reduce poverty and in political processes that affect their rights. Ensure that older people have the same access to development grants, income-generation projects and credit as younger people do.


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• Enact labour market and etnployment policies and programmes that enable the participation of older people in meaningfül work at the same rate as other age groups, according to their individual needs, preferences and capacities (e.g., the elimination of age discrimination in the hiring and retention of older workers). • Support pension reforms that encourage productivity, a diverse system of pension schemes and more flexible retirement: options (e.g., gradual or partial retirement). • Provide greater flexibility in periods devoted to education, work and caregiving responsibilities throughout the life course. • Recognize the contribution that older women and men make in unpaid work in the informal sector and in caregiving in the home. • Recognize the value of volunteering and expand opportunities for older people to participate in meaningful volunteer activities, especially those who want to volunteer but cannot because of health or transportation restrictions. • Provide policies and programmes in education and training that support lifelong learning and skill development for older people, especially in information technologies and agriculture. • Provide intergenerational activities in schools and teach young people about active ageing. • Work with the media to provide realistic and positive images of active ageing, as well as educational information for older people. 5. Improve health and increase independence by providing protection to older people, particularly in difficult times. • Recognize the relevance of HIV/AIDS to older people and provide necessary financial and caregiving support to older people who care for dying family members and orphaned grandchildren. • Enforce occupational safety standards that protect older workers from injury and the modification of formal and informal work environments so that older workers can continue to work productively and safely. • Uphold older people's right to maintain control over personal decision-making, even when they are frail. • Support the provision of a social safety net for older people who are poor and alone, as well as social protection initiatives that improve the quality of life. • Protect older consumers from unsafe medications and treatments. • Explicitly recognize older people's right to and need for secure, appropriate shelter, especially in times of conflict and crisis. Provide housing assistance for older people when required (paying special attention to the circumstances of those who live alone) through rent subsidies, cooperative housing initiatives, support for housing renovations, etc.


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• Specifically recognize and act on the need to protect older people in emergency situations (e.g., by providing transportation to relief centres to those who cannot walk there). Recognize the contribution that older people can make to recovery efforts in the aftermath of an emergency and include them in recovery initiatives. • Recognize crimes committed against older people during war and bring the perpetrators to trial. • Enact legislation that protects widows from the theft of property and possessions and from harmful practices such as health-threatening burial rituals and charges of witchcraft. • Recognize elder abuse (physical, psychological, financial and neglect) as a crime, and encourage the prosecution of offenders. Train law enforcement officers, health and social service providers, spiritual leaders, advocacy organizations and groups of older people to recognize and deal with elder abuse. • Increase awareness of the injustice of elder abuse (especially domestic violence against older women and widows) through public information and awareness campaigns. Involve the media and young people, as well as older people in these efforts. 6. Stimulate Research and Share Knowledge • Clarify and popularize the term "active ageing" through dialogue, discussion and debate in the political area, public fora and media outlets such as radio and television programming. • Assist developing countries in collecting and analyzing pertinent information for policy-making on population ageing. • Publish more detailed analyses of the evidence related to the various determinants of active ageing and how they interact, the life course approach to understanding older age, and specific, successful policies and programmes that foster active ageing. • Involve older people in efforts to develop research agendas on active ageing, both as advisors and as investigators. • Disseminate the results of reliable research efforts on ageing in ways that can be easily understood and used by policy-makers, the media, seniors' groups and the general public. 5.2 Policies for the Future In terms of recognition of the role of -and policy to support- family carers, all Member States of the European Union have a very long way to go. The role is recognised to varying in the different Member States of European Union. Clearly, what is expected of families in the future will depend to a large extent on existing ideology. One would not, for example, expect that in Denmark, where there has been an explicit assumption that families will not care for their elderly relatives, there would be sudden change of policy towards family responsability (although it is assumed that spouses will provide care, and support is being developed for carers to some extent). In the same way, one would least expect a dramatic withdrawal of family care in countries such as greece, where such care has traditionally been taken for granted and in those countries where there is legal obliggation to care for elderly realtives. In Spain, while various


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policy documents may make it easier for families to care for their elderly relatives, there is no single policy whose direct aim is to help families with the needs and problems associated with caring for elderly people. In Italy the economic advantages of family care for elderly people are recognised by the government, but there is no overall policy for supporting them in their task. There is an urgent need for the govemments of the Member States to recognise just how much they currently depend on informal carers - many of whom are themselves elderly - and to consider all possible options in making solid plans for the future. There is an urgent need for better information to allow planning for the future and in particular in order to be able to prepare for the large increase associated with the coming of the 'baby boom' cohorts into old age. Further research is required in three specific areas: Provision of Basic Information on the Situation of Family Carers in the European Union In most of the Member States, there is a pressing need for nationally representative research on the socio-demographic and socio-cultural characteristics of carers, their needs and the assistance they provide to elderly people (Jani-Le Bris, 1993). Evaluation of the Effects of Policies and Initiatives to Support Family Carers Once base level information bas been obtained, it will then be possible to undertake research to ascertain the effect of initiatives and policies on the quality of life of elderly people and their carers. Specific information is requested on: - the costs and effectiveness of public policies for the care of elderly people - the economic value of care provided by families and the economic costs incurred - the costs and effectiveness of specific service interventions including detailed analysis of the benefits/costs to carers - the acceptability and likely effects of financial incentives versus service provision for family carers (including the effects, of such incentives on the quality of family relationships). Research on Attitudes to Receipt of - and Provision of - Family Care In many Member States there is a shortage of research on prefèrences for care among people of all ages. It is important that such research be promoted, and that the results of such research be interpreted within the existing sociocultural context. Comparative international research - particularly of a longitudinal nature - would be particularly fruitful. Presented below are four 'options' which may be considered in approaching the issue of future care for elderly people. Family care is not, and should not be, the only option considered. 1. Reducing Demand for Care: A Preventive Approach One strategy for the future could be an attempt to reduce the demand for care by focusing on improving elderly people's health and independence. Development of Preventive Health Care and Information Programmes Early detection of eyesight, hearing and foot problems, and encouraging people to adopt healthier lifestyles could have considerable potential for reducing morbidity and increasing


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mobility and independence in old age. Consideration would have to be given to inequalities among the elderly population in terms of access to services and information. Housing Strategies Housing policy can have very significant implications for elderly people's ability to live independently; an OECD report published in 1990 notes that "housing policies are seen as critical links in formulating integrated responses to the problems of long-term care" (OECD, 1990b: 5). Elderly people's housing is often inappropriate in terras of design and operating costs and in many countries there is a shortage of suitable housing - in particular, of small units of accommodation (OED, 1990a, 1990b). Granny flats, where an elderly person and a family can live side-by-side, can enable elderly people to maintain their independence yet have help, at hand (Tinker, 1991), while for elderly people witlf disabilities who, need more support than can be provided in non-specialised housing, congregate or sheltered housing with extra care can provide a satisfactory solution (Tinker, 1989). Bearing in mind the potential specialised housing can have for elderly peoples' independence, attempts should be made to develop social and housing policy for elderly people in an integrated manner, with special attention being given to the development of small, purpose-built or specially- adapted living units. Development of "Assistive Technology" 'Mere are many technological devices - many of them comparatively simple and inexpensive - which have high potential for enabling elderly people to live independently in their own homes. Mobility aids, alarms, telephone links, etc., could all enhance disabled people's ability to care for themselves. Bearing in mind that there will be more very elderly people in the future, and that willingness to use this technology is likely to increase, serious consideration should be given to research and development in this area. Creating, Extending andlor Restructuring Home Care Services At present, most home care services (even where they are available) tend to be inflexible, and to provide standardised - rather than tailor-made - care. Attempts should be made to ensure that home care services reach those most in need of them, and that they are able to respond in a flexible way to individual need. Services for Independence Some heath and social services which are aimed at maintaining or restoring independence in old age can enhance elderly people's ability to continue living in their own home. Health expenditure priorities for services such as physiotherapy, speech and occupational therapy should be reviewed. Encouraging self-sufficiency Encouraging elderly people's self-help skills (e.g. teaching widowed people, who have always relied on their partrier to perform what they saw as gender- appropriate roles, how to do those things for themselves) and encouraging elderly people to, form groups to help one another - e.g. to run telephone advice lines or provide assistance - would not only make people more


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independent but would capitalise on their skills and knowledge. Consideration should be given to the development of self-sufficiency training programmes for elderly people living alone or with a disabled elderly parmer. Reallocation of Resources 'Mere would appear to be considerable scope, in many countries, for moving resources from acute care towards primary and long term care. Bearing in mind the increasing size of the elderly population in the European Union, consideration should be given to the possibility of moving health and social care resources from "curing" to "caring't. 2. Stimulating Supply: Supporting Carers At present, support of any kind for carers is poorly developed in Europe. There are few services designed specifically to meet their needs, little formal financial support to compensate thern for their input and few facilities to meet their emotional and training needs. Where community services are provided they are usually focused primarily on the needs of the elderly dependant, so that the abilities and needs of family members are considered of only secondary importance. A complementary approach to meeting the care needs of elderly people in the future could fécus on the development of flexible mixed welfare arrangements which would not only make it easier for families to provide care for elderly relatives but would consider their needs alongside those of their dependants. Developing Family Based Policies for the Elderly Assistance for family carers should form an integral part of the objectives and responsibilities of services and organisations looking after elderly people; Member States should be encouraged to develop health and social policies for elderly people which take into account the needs of family carers. Family Centred Services At present, most health and social services provided for elderly people focus specifically on the needs of the elderly person and providers frequently make assumptions concerning the availability of family care. Consideration needs to be given to making health and social services provision farnily-focused to the extent that need assessment is based on the needs of the farnily as a whole, building on its strengths and supporting its weaknesses. Developing co-operation and co-ordination between différent care providers (including principal carers) There is a need to ensure the co-ordination of care for individual elderly people, ensuring complete care coverage, reducing overlaps and taking into account both the prefèrences of the dependent person and the abilities and prefèrences of the farnily carer/s. Where one family member is providing the majority of care, consideration should be given to encouraging input from other available fanùly members. Consideration should be given to development of "key workers" for elderly dependants and their families, to co-ordinate care and ensure complete care coverage, taking carer needs very much into account.


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Provision of Respite and Other Support Services Families are better able to tolerate the long-term stress of caring for a disabled elderly person - especially one sufféring some form of dementia or with heavy personal care assistance needs - if they are able to obtain periodic respite (Doty, 1986). The possibility of having a regular break from caring was one of the needs most frequently mentioned by carers in the eleven European Foundation reports. Respite care can take many forms, including "granny sitting", day centres, temporary residential care, holiday stays for dependent people, temporary fostering (with another family member or someone unrelated to the elderly person). It is important that such alternative care arrangements should be highly visible and accessible; carers need reassurance that, should there come a time when they are unable to continue caring, alternative care will be available at short notice. There is a need to review respite care provisions and (where they exist) evaluate them in terms of costs and benefits to elderly people and carers; and for consideration to be given to the further development of such services - to be provided on a regular basis where required - to prevent the overburdening of carers. The provision of other services such as home nursing, home care, meal-provision and day-centres can be invaluable in supporting informal carers in their tasks. Provision of Financial Supportfor Carers Family carers are often financially disadvantaged in numerous ways, not only at the time of care giving but also, frequently, later in life. Consideration should be given to the possibility of providing financial assistance in respect of : - recognition of the value of the work undertaken - realistic compensation for forféited employment opportunities (including pension entitlement cover for periods of care giving) - expenses connected with the dependant (e.g. medical and paramedical costs, purchase/rental of minor equipment and technical resources - e.g. wheelchairs, walking frames) - tax incentives for families taking elderly relatives into their home. Introduction of Flexible Employment Arrangements At present many women experience some degree of conflict between caring, care giving and paid employment. There is a need for the development of measures which would give them a real choice between various options. At one level, they need to be able to decide whether to remain in employment, reduce or stop work; at another level they need to be assured of a greater level of flexibility - where they choose to work - to combine their two roles. Consideration should be given to: - the provision of alternative care arrangements for the dependent person to enable carers wishing to undertake paid employment to do so - the establishment of flexible working hours/job sharing for carers - - the establishment of paid leave for carers, with coverage of rights to pension and sickness benefits - guaranteed (or priority re-employment) - assured social insurance rights (to cover illness and old age) where it is necessary to reduce


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hours or give up work due to carer responsibilities Provision of Training and Information for Carers Most carers take on the job of caring for elderly dependants with no specialist knowledge or training. They have to learn as they go, frequently at considerable cost to their physical and psychological health and at considerable economic expense. Special training in practical, psychological and emotional aspects of care can lead to improvements in their quality of life and greater satisfaction in the situation and relationship to care (Jani-Le Bris, 1993a: 136). Apart from training programmes, information on the problems of old age needs to be provided in books, leaflets, television programmes, videos and local advice centres. Elderly people and their carers also need to be fully informed about the services and financial support available to them. For choice to exist, people have to know what is available to them. There is a need for consideration to be given to the review, evaluation and development of training programmes and information sources to family carers. Encouraging and Supporting the Creation of Associations of Carers (National and Local) and Support Groups Associations of carers can assist carers by allowing them to articulate their common needs and exert pressure on Governments to meet these needs. Carer groups have been found to provide valuable support to family carers, especially where psychological support and information is provided with some professional input. The development of carers associations (at national and local level) and carers support groups should therefore be encouraged. 3. Alternative Approaches to Care in the Community The options so far discussed focus, firstly, upon reducing demand for care among future elderly populations by improving health and independence and, secondly, upon providing adequate support to enable and encourage families to provide care for elderly relatives. A third way of addressing the issue of future care for elderly people is to attempt to think beyond existing structures towards other ways in which care needs could be met. Alternative ways of meeting elderly people's needs could include: - intergenerational housing schemes (as how has been developed in Spain). - "service exchanges" at which elderly people can pay for the assistance they need with their own time and skills, rather than money. - incentives for family members living apart to form family groups - "surrogate" families in which elderly people without relatives can live with families in exchange for payment for rent and care provided. 4. A New Face for Institutional Care? It is important to recognise that the antipathy to institutional care which emerges so clearly from the literature on care prefèrences is based on individuals' perceptions and experiences of particular forms of institutional care. The developrnent today of alternative forms of institutional care could alter the perceptions of tomorrow's elderly people to the extent that they enter individual consciousness as desirable and accessible options.


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With greater awareness of individual rights, higher demands for a good quality of life and less willingness (or need) to accept what appears to be the 'only viable alternative', the face of residential care could change considerably. Many older people will continue to need (and some to prefer) residential care, even on today's design. Discussion of the ways in which it might develop in the future should accompany consideration of other options. Inevitably, provision is all Member States is moving towards a 'welfare mix' of providers and options for care. There is a need to strengthen the debate by moving from an 'either/or' approach towards a concern with balance and a consideration of the quality of life for both older people and their carers. 6. PROGRAMMES AND PROJECTS IN EUROPEAN COMMUNITY 6.1. Health Programme The Community action programme on Health Promotion aims at increasing the impact on health by supporting health promotion activities. It contributes to guaranteeing a high level of human health protection in the definition and the implementation of all policies in the Member States and in the Community. It empowers a health promotion approach by developing health promotion strategies and disseminating models of good practice. Through specific prevention and health promotion measures, the Health Promotion Programme aims at improving the quality of relevant information. Attention will also be paid to improving health messages in order to keep both health professionals and policy makers, in particular, up to date with any new ideas, know-how and techniques related to public health, prevention of diseases and the promotion of health. The Health Promotion Programme supports the development of strategic health promotion networks in creating and launching their initiatives. Once firmly established, the networks shall fmd other sources for fianding as bodies cannot be financially supported on a long-term. basis. The Commission has already taken a proactive role in establishing and supporting European networks which cover the following areas: Settings - health promotion in the workplace, schools and capital cities, Issues - the promotion of physical activities and mental health, Population groups - the elderly. Evaluation and quality assurance will be developed as an integral part of the programme. A mid-terin evaluation has been commissioned and will be carried out, which covers questions such as whether the programme has attracted valid projects that can facilitate cooperation on regional, national, supra- and international level; and whether any sustainable networks have been established which may provide the infrastructure for policy development. Inter-linkages with other relevant Community programmes will be strengthened, and the relevant partnerships developed with the private sector, NGOs (Non Govermnental Organisations), public bodies and international organisations. In accordance with the Commission's policy that enlargement is of prime importance, once the decision of the Council on the participation of the applicant countries in the Public Health Programmes has come into force, the countries concernedwill be encouraged to, take part in health promotion activities.


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EUR 800 million have been allocated for the new Community public health action programme (2001-2006) which will replace the eight previous programmes. To bridge the gap between the end of the period of application of these programmes and the adoption of the new comprehensive public health action programme, Mr Trakatellis, rapporteur for the new public health programme, has proposed the extension of several Community programmes on health promotion, information, education and training, the action plans to combat cancer, to prevent AIDS and other communicable diseases, to prevent drug addiction (two-year programme), as well as the programmes concerning health monitoring and pollution-related diseases (one year programme). The Commission has identified three general objectives for its new comprehensive action programme:

1. to improve health information by developing a full Internet health information system aimed at the public, health workers, health authorities and industry;

2. to improve rapid reaction capability with regard to serious health threats, such as major diseases and new risks, by establishing early warning mechanisms, by coordinating action amongst the competent national authorities and by taking grass-roots action;

3. to combat health determinants, i.e. basic factors which have an impact on health, via measures to promote health and prevent disease. Priority will be given to premature death and to disorders caused by major diseases such as cancer, cardiovascular diseases and mental illness, and key lifestyle-related risk factors will be examined (smoking, drug and alcohol consumption, stress, socio-economic and environmental factors).

The Commission has also proposed that a European Health Forum be established to improve transparency and the coordination of health policy at Community level. The Commission's intention is to involve all those concerned with public health (health organisations, health representatives, volunteers, universities, etc.) and allow them to contribute to the framing of health policy, thereby making it more open, transparent and better able to meet new requirements thanks to a constant comparison between respective experiences and practices. 6.1.1. Health Programme 1999

In 1999 were sustained proposals for recommendations for a healthly diet and obtain an overview of the situation in Europe.Account were taken of the results of the Community Research Programmes concerning nutrition and health (BIOMED and FAIR). Attetion was given to the issue of bodyweight as a broad concept affecting the well-being of people, as eating disorders and other problems related to body image. The European heart health initiative was focused on alliance building, on cross-border collaboration, information exchange, and the promotion of effective interventions and policies. The drafting of a Commission communication on alcohol and health was planned, based on a review made in the Member States. The preparations for a conference on alcohol and health, celebrated in the year 2000, was supported. The scientific, social, economic and political dimensions of the issue of alcohol and health were discussed.


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The promotion of health-enhancing physical activity was continue by enlarging and strengthening the network activities and by initiating the implementation of the strategies they had agreed upon. Emphasis was put on mental health and unemployment. In this connection the European Network for Mental Health promotion worked in close cooperation with the European network of National Health Promotion Agencies, responsible for socially disadvantaged and excluded groups, and with the European Network for Workplace Health Promotion. During that year an conference was hold in Finland on the promotion of mental health, in wich the Commission played an active role. Health policy guidelines for successful ageing for the elderly and older people were developed, with a view to strengthening collaboration with other services, notably in the field of research activities concerning "the ageing of population" within the context of the 5th Framework Programme on Technical Research and Development. The possibility of appointing a high level group of experts in this area would be examined. 1999 was the "Year of Elderly". During that year other priority areas were focused on the continuation of projects on European Master's in the field of Public Health. Four training programmes on public health, health promotion, PH nutrition and gerontology were implemented. The glosary of Public Helath Technical Termes, commenced in 1998, was´extended to all official languages of European Union. The III European Summer School on Health Promotion and Public Health was hold in Luxembourg between June and July. 6.1.2 Health Programme 2000 Initiatives aiming at putting existing knowledge into practice to influence determinants of health, were given priority. The development of infrastructures for health promotion in Member States and EEA countries was continued to be supported, with emphasis on capacity building in health promotion, incluiding means and methods for emplowerment and citizens' participation in health development, as well as for the establishment of partnerships.

The Health Promotion Programme was continued to concentrate on operating though three key priority dimensions which are specific below: issues, population groups and settings.

The development of the European Heart Health Initiative (EHHI) continued. The results of this project have been presented and discussed at a high profile conference for public health experts, health professionals and policy markers, during this year. The final results of the European Comparative Alcohol Study (ECAS) are available since the end of this year.

Health promotion policy guidelines for succesful ageing were developed based on the work of a high level group of experts in this area. Socially disavantaged and excluede groups will be a priority of the ENHPA and the Meagalopes Network. Attenion was given to activities for people with chronic diseases or disabilities such as diabetes, epilepsy etc.

The European Network of Healt promoting Schools (ENHPS) was continued to further develop and systematically disseminate the healthy school concept, incluiding models of good practice, by taking into a account the advice of EVA II evaluation project as well as the recommndations of the Commission report to the Council. Within the European Network of Workplace Health Promotion (ENWHP) a thorough evaluation of identified models of good practice in workplace


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health promotion in all Member States have been undertaken. Health promotion in capital cities (megalopes) of Member States and EEA countries was further developed concrette activities and policy recommendations. Attention was focused on out-of-school youth, disadvantaged young people, young families, and elderly people.

Coordination with ENHPA will be encouraged in the area of disadvantaged groups. The field of health promotion in health care settings was a priority area of activities in 2000. Beides, European Master's in Public Health Nutrition -had enrolled the first students in September 1999- was evaluated in the end of this year. Enrolment for the European Master's in Public Health and the European Master's in Health Promotion was started in this year. The project to develop European Master's in Gerontology was continued aiming at enrolling the first students in 2001.

6.1.3. Health Programme 2001

The year 2001 is a period of transition towards this new public health strategy. As a consequence, projects funded under the extended health promotion programme have to show clear links with the activities foressen under the new programme of Community action in the field of public health.

Priorities corresponding to activities foreseen under strand 3 of the proposal for a Decision of European Parliament and the Council adopting a programme of Community action in the field of public health are:

a) Tackling lifestyle-related health determinants in certain settings (schools, workplace,

health care establishments) b) Tackling lifestyle-related health determinants for certain target groups (children and

adolescents; elderly; migrants). Health promotion activities can address these concerns, both by reducing older people's dependence on health, social and welfare services, as well as by helping older people to maintain good function, independence and social contacts. For this purpose, strategies and policies will be analysed with-promoting interventions for elderly people.

c) Tackling single lifestyle-related health determinants through issue-based approach (mental health, physical activity, heart health, alcohol, nutrition, alcohol, musculo-skeletal disorders

d) Tackling health determinants through training.

The project to develop European Master's in Gerontology have continued aiming at enrolling the first students in 2001.

The Commission services will support the organisation of the XVII World Conference of the International Union for Health Promotion and Eduaction (IUHPE) which is to take place in Paris in July 2001. 6.2. Elderly Programmes Since 1984, the Community has carried out studies and seminars focussing on the contribution of elderly to economic and social life. The first action programme for the elderly, ran from 1 January to 31 December 1993. It highlights how important it is to further the integration of the elderly in society through a targereted approach and to strengthen solidarity between the generations. 1993 was designated the European Year of Elderly and solidarity between the


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generations. The Community introduced co-ordinated measures, like competitions and seminars, jointly with the Member States and local or regional authorities. The Commission has submitted a proposal for a second action programme (COM(95)0053)24 but the proposal has not seen adopted by the Council owing to some Memeber States' objetions to the use of Article 308 as legal base. the same argument was used for not adopting the fourth poverty programme. The elderly have also been taken into consideration in other programmes such as: poverty programmes, Helios, progrmammes to promote equality between men and women and programmes on behalf of the family. 6.3. Health and Ageing Projects: Alzheimer's Disease The next projects received financing from the European Commission in 1997: - Les Statistiques hospitalieres: un instrument pour la surveillance de la maladie d'Alzheimer et des autres maladies neuro-degeneratives (Institut de Démographie - Université Catholique de Louvain). - Evaluation de la Qualite de vie dans la Maladie d'Alzheimer (Université de Reims Champagne Ardenne). - Lawnet (Alzheimer Europe). - 8th Annual Meeting of Alzheimer Europe (Alzheimer Europe). - Synthesis of emerging data on the impact of Alzheimer's disease, and on policy and services responses across Europe (The Welsh Institute for Health and Social Care). - Early detection and psychological rehabilation to maintain quality of life in dementia - a training package (Hull and Holderness Community Helath NHS Trust). - Remembering yesterday, caring today (European Reminiscence Network). - A trans-national comparison an evaluation of the role of institutional care for people with dementia (Alzheimer Scotland / Action of Dementia). - Qualifizierung und qualitätsverbesserung bei der pflege von Alzheimer patienten (Noorderpoort College). - Euro-Candid: European counselling and diagnosis in dementia (The Institute of Neurology). - Neurodegenerative erkrankungen bei migrantien in EU-Ländern-Prävalenzen und versorgungssituation (Wissenschaftliches Institut der Ärtze Deutschlands). - What needs do demented person have? What should care givers attach importance to? (The Danish National Institute for Elderly Education). - Synthesis and dissemination of EC-Funded Alzheimer's Project (Middlesex University Health Research Centre). - The interface between family care-givers and institutional care for people with Alzheimer's disease and related disorders: developing relevant training resources (University of Wales). - Remind (Research effort to maxime information on neurodegenerative diseases), (European Institute of Women's Health). - Alzheimer brochure for children (Association Luxembourg Alzheimer). - Alzheimer's disease and public health European conference (Fundación Alzheimer España).

24 OJC 110, 02-05-1995, p. 53.


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- Study of the psychological relationship between professional caregivers (nurses and pshysiotherapists), demented patients and family caregivers: how to optimize it (Fundación Alzheimer España). - Nutrition, maladie d'Alzheimer et promotion de la santé-Education nutritionnelle et malade d'Alzheimer (Chu Purpan-Casserladit Toulouse). - Alzheimer network with hospitals and shelter houses-Alzheimer network with doctors and health professionals (Hellenic Association of Gerontology and Geriatrics). - Prospective memory failures in dementia of the Alzheimer type (University of Aberdeen) - Dealing with cognitive and functional impairments through special stuctured exercise programs in patients with AD (Aristotelian University of Tessalonniki). - Concerted European Project on the Harmonisation of Common Psychometric instruments for the diagnosis and evaluation of Alzheimer's disease and related disorders (University Hospital of Maastricht). In 1998 the number of projects to finance was enough lower : - Network facilitation and disemination of Alzheimer's information and knowledge (Middlesex University). - Studying for care (Asociaicón de Familiares de Enfermos de Alzheimer de Álava). - Promoting of minority ethnic older persons with Alzheimer's disease and related disorders (University of Bradford). - Remembering yesterday, caring today-A manual, a conference and a training programme on reminiscence for family carers (Age Exchange Theatre Trust). - Dementia: Just another disability (Glasgow City Council). - 9th Annual Meeting of Alzheimer Europe (Alzheimer's Disease Society). - Alzheimer Europe Intranet (Alzheimer Europe). 6.4 European Crisis of Alzheimer's Projects According to Jeannot Krecke, chairman of Alzheimer Europe, at European level the dementia is not recognized sufficiently and the financing of the important pilot projects is in a deep crisis. The article 152 of the Amsterdam's Treaty limits the action of the European Union in the public health field to "improving public health, preventing human illness and diseases and obviating sources of danger to human health". Consequently action programs have been adopted against plagues for the health, as the AIDS or the cancer. However, dementia hasn't been settled down among the priorities by the European institutions. Nevertheless, in the most recent years European Parliament has made several appeals to European Commission to create a specific European Action Program for the Alzheimer's disease. Of course, since 1996 two resolutions have been adopted that recognized that Alzheimer's disease has become a growing threat and a genuinely European plague. Recently Karla Pejs, European Parliament's deputy and chairman of Alzheimer's Holland Association proposed an amendment to the 2000 budget to assign EURO 2,5 million for measures to improve the life quality of people who suffer from neurodegeneratives diseases and relationed forms, and for the informal caregivers. In spite of the European Parliament's clear commitment, the European Commission has assigned these funds for the health promotion general budget. This actions threatens seriously the future of the European cooperation in the dementia field.


34

Following these events, Alzheimer Europe has intensified its contacts with the European Parliament's Members through its member organizations , with the National Ministers of Health so that they become aware of this serious crisis for the European cooperation. The intention of these contacts isn't only to guarantee a solution in the short term to solve actual problems like the assignment of the 2000 budget, but also to assure support in the long term through the adoption of a legal base for the Alzheimer's projects among European Member States in the future. During the Madrid's Conference about the life quality of demented people that took place between 3 and 4 September 2000, representatives of the Alzheimer Europe organizations met to discuss a common campaign and a strategy to increase the knowledge about the European dimension of dementia, under the responsibility of European Commission, European Council and Ministers of Health. While the 2nd European Conference was taking place in Madrid on the topic of the Life Quality, the representatives adopted a resolution that emphasizes the fact that dementia is becoming a challenge for the health and they profiled the way to find European answers to these European problems, as well as measures for the European action in dementia field. It is very important keep an eye on Alzheimer's disease and other forms of dementia in the framework of the new programme of Community action in the field of public health. 7. CONCLUSION As stated in the WHO Brasilia Declaration on Ageing (1996), healthy older persons are a resource for their families, their communities and the economy. Thus European Member States should recognize healthly ageing as a key item on their development agenda, and should see their ageing populations not as a problem but as potential solution to problems. Too often discussed merely in terms of their unmet needs, elderly people should be seen first and foremost as a resource to be drawn upon. More emphasis can be given to addressing conditions wich are becoming ever more important as a result of the ageing population, notably Alzheimer's disease and other mental disorders. It is very important that the needs of carers become recognised officially and they aren't ignored for thinking they are "doing their duty" only. Unless the governments of Member States fully recognise the value of contribution made by families, acknowledge the implications of the demographic and social changes wich will take place over the next 20 years, and develop policies built upon them, there can be no guarantee that, in 20 years time, families will still be able - or willing - to care for their elderly realtives. In this case, individual states would be left to "carry the can" and the quality of life of elderly people would probably deteriorate.


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BIBLIOGRAPHY Aaron H.J., Reischauser R.D. Should we retire Social Security? Granding the Reform, in 17 The Brookings Rewiew (1999) p.6 Ageing population and technology: Challenges and oportunities. ETAN Working paper, European Communities, Luxembourg 1998. Beard CM, Kohmen E, Offord K, Kurland LT. Is the prevalence of dementia changing? Neurology 1991;41:1911-1914. Bolle P. Pension reform: What the debate is about, International Labour Review (2000), p.197-212. Comisión de las Comunidades Europeas. Comunicación de la Comisión, Informe sobre la Protección social en Europa 1999, Bruselas, 21.03.2000 COM(2000) 163 final Comisión de las Comunidades Europeas, Propuesta de Decisión del Parlamento Europeo y del Consejo, relativa a la prolongaicón de determinados programas de acción comunitaria en materia de salud pública, adoptados por las Decisiones n° 645/96/CE, n° 646/96/CE, n° 647/96/CE, n°102/97/CE, n° 1400/97/CE y n° 1296/1999/CE y por la que se modifican dichas Decisiones, Bruselas, 25.07.2000 COM(2000) 448 final, 2000/192 (COD). Comisión de las Comunidades Europeas, Comunicación de la Comisión, Tendencias Sociales: Perspectivas y retos, Bruselas, 1.3.2000 COM(2000) 82 final Commission Européenne, Actif en vieillissant. Promouvoir une société européenne pour tous les âges. Forum spécial. DG Emploi et affaires sociales de la Commission européenne. Communautés européennes, 1999. Commission of the European Communities. Communication from Commission, Proposal for a Directive of European Parliament and of the Council on the activities of institutions for occupational retirement provision,Brussels, 11.10.2000 COM(2000) 507 final, 2000/0260 (COD) Commission of the European Communities. Communication from Commission to the Council, to the European Parliament and to the Economic and Social Commitee, The Future Evolution of Social Protection from a Long-Term Point of View: Safe and Sustainable Pensions, Brussels, 11.10.2000 COM(2000) 622 final, p. 20. Commission of the European Communities. Communication from the Commission to the UN International Year of Older Persons. Towards a Europe for All Ages: Promoting Prosperity and Interganerational Solidarity, Brussels 21.05.1999 COM(1999) Commission of the European Communities. Social Europe. 1993: European Year of Older People and Solidarity between Generations. Directorate-General for Employment, Industrial Relations and Social Affairs, Brussels, 1993. Conférence sur le financement de la protection sociale en Europe. Helsinki, les 22 et 23 novembre 1999.


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Conférence sur la protection sociale en tant que facteur productif. Santa Maria da Feria, du 13 au 15 avril Consejo de la Unión Europea-Secretaría General. Sanidad, Sesión n° 2319 del Consejo, Bruselas, 14.12.2000. ECB. Population ageing and fiscal policy in the euro area, ECB Monthly Bulletin, July 2000, p.59-72 Economic Policy Commitee. Progress report to the Ecofin Council on the Impact of ageing populations on public pensions systems, Brussels, 6 november 2000, (EPC/ECFIN/581/00-EN-Rev.1), p.62. Eurolink Age. A European Community Health Policy for Older people, Eurolink Age, London, 1993. Eurolink Age. Caring: A European Issue?, Eurolink Age Bulletin, July 1993. European Conference of Independent Living of Older Persons and Persons with Disabilities, Helsinki, 6-7 October 1999. Federal Ministry of Labour, Health and Social Affairs of Austria. A society for all ages. Employment, Health, Pensions and Intergenerational Solidarity. International Symposium, Vienna, 12-13 October 1998. Finch J., Mason J. Family Care of the Older Elderly: United Kingdom, Working Paper No WP/93/22/EN, European Foundation for the Improvement of Living & Working Conditions, Dublin. Gale WE. The Ageing of america, Will the Baby boom be ready for retirement? in the 15 The Bookings Review (1997) p. 4. Kotlikoff LJ., Sachs J. Privatisation of Social Security, Its High time to Privatize, in the 15 Booking Review (1997) p.16. Group of Ten. The Macroeconomic and Financial Implications of Ageing Populations, BIS, April 1998, p.58. Hofman A, Rocca WA, Brayne C et al. The prevalence of dementia in Europe: A collaborative study of 1980-1990 findings. Eurodem Prevalence Research Group. Int J Epidemiol 1991;20:736-748. Hurst J. Challenges for health systems in Member Countries of the Organisation for Economic Co-operation and Development. Bulletin of World Health Organization , 2000, 78: 751-760. Jorm AF. Cross-national comparisions of the ocurrence of Alzheimer's and vascular dementias. European Archives of Psychiatry and Clinical Neuroscience 1991;240:218-222.


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Jorm AF, Korten AE, Henderson AS. The prevalence of dementia: a quantitative integration of the literature. Acta Psychiatrica Scandinavica 1987;76:465-479. McMorrow K., Roeger W. The Economic consequences of Ageing populations (A comparision of the EU, US and Japan), ECFIN Quintin O. Making Pensions Sustainable - The Approach of the European Commission, Speech, Centre for European Reform, Brussels - 15 February 2001. Report from the conference on Social Protection as a Productive Factor. Santa María de Feira, 13-15 April. Roserveare D., Leibfritz W., Fore D., Wurzel E. Ageing Populationsm Pension Systems and Goverment Budgets: Simulations for 20 OECD Countries, París: OECD, 1996, (OECD/GD(96)134)p.70 Salvage, A. V. Who will care? Future prospects for family care of older people in the European Union, European Foundation for the Improvement of Living & Working Conditions, Dublin, 1995. Tanzi Vito. Globalisation and the future of Social Protection, IMF Working Paper (WP/00/12) Walker A. Older People in Europe, Social and Economic Policies. The 1993 Report of European Observatory. Commission of the european Communities, Directorate General V, Employment, Social Affairs, Industrial Relations, 1993.


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ANNEXES


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ANNEX I

Decision No 372/1999/EC of the European Parliament and of the Council of 8 February 1999

adopting a programme of Community action on injury prevention in the framework for action in the field of public health (1999 to 2003)

Text: DECISION No 372/1999/EC OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL of 8 February 1999 adopting a programme of Community action on injury prevention in the framework for action in the field of public health (1999 to 2003) THE EUROPEAN PARLIAMENT AND THE COUNCIL OF THE EUROPEAN UNION, Having regard to the Treaty establishing the European Community, and in particular the first indent of Article 129(4) thereof, Having regard to the proposal from the Commission (1), Having regard to the opinion of the Economic and Social Committee (2), Having regard to the opinion of the Committee of the Regions (3), Acting in accordance with the procedure laid down in Article 189b of the Treaty (4), (1) Whereas, throughout the Community, injuries must be considered as one of the major health scourges referred to in Article 129 of the Treaty; whereas they are a cause of substantial public concern; (2) Whereas Article 129 of the Treaty expressly provides for Community competence in this field in so far as the Community contributes towards ensuring a high level of human health protection by encouraging cooperation between the Member States and, if necessary, by lending support to their action by promoting coordination of their policies and programmes, and by fostering cooperation with third countries and international organisations competent in the field of public health; whereas Community action should be directed towards the prevention of diseases and the promotion of health education and information; (3) Whereas, in accordance with Article 3(o) of the Treaty, Community action includes a contribution to the attainment of a high level of health protection; (4) Whereas, in its communication of 24 November 1993 on the framework for action in the field of public health, the Commission identified intentional and unintentional injuries and accidents as a priority area for action in the public health field; (5) Whereas the large number of injuries caused each year in Europe has incalculable repercussions not only for the individuals concerned but also in social and economic terms; (6) Whereas prevention, and the consequent reduction, of injuries should be a priority in the context of Community action in the field of public health, particularly in view of the great social and economic benefit to be derived from a Community measure, the cost-benefit ratio of which is also exceptionally favourable; (7) Whereas in areas which do not fall within its exclusive competence, such as action on injury prevention, the Community takes action, in accordance with the principle of subsidiarity, only if and in so far as the objective of the proposed action can, by reason of its scale or effects, be better achieved by the Community; (8)Whereas Community action on injury prevention will yield added value by bringing together activities already undertaken in relative isolation at national level and by enabling them to complement one another, with significant results for the Community as a whole; (9) Whereas an action programme should be undertaken to help reduce the incidence of injuries; (10) Whereas the activities carried out in the framework of the Community system of information on home and leisure accidents (EHLASS), which was introduced by Decision No 3092/94/EC of the European Parliament and of the Council (5) and expired at the end of 1997, produced positive results; whereas they should therefore be continued; (11) Whereas one of the essential preconditions for the implementation of this programme is the establishment of a Community injury data-collection and information system; whereas this system should be based on strengthening and improving on the achievements of the former EHLASS system; (12) Whereas the implementation of the Community data collection and information exchange system necessarily presupposes compliance with legal provisions concerning the protection of individuals with regard to the processing of personal data and the introduction of arrangements to guarantee the confidentiality and security of such data; whereas in this connection the European Parliament and the Council adopted Directive 95/46/EC of 24 October 1995 on the protection of individuals with regard to the processing of personal data and on the free movement of such data (6);


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(13) Whereas it is of paramount importance for the epidemiology of injuries and for determining Community health indicators as referred to in Decision No 1400/97/EC of the European Parliament and of the Council of 30 June 1997 adopting a programme of Community action on health monitoring within the framework for action in the field of public health (1997-2001) (7); whereas data is collected and information exchanged on the basis of comparable and consistent data on injuries; (14) Whereas, by providing support for acquiring better knowledge and understanding of, and wider dissemination of information about, injury prevention, ensuring improved comparability of information in this field and developing actions complementary to existing Community programmes and actions, while avoiding unnecessary duplication, this programme will contribute to the achievement of the Community objectives set out in Article 129 of the Treaty; (15) Whereas, in general, Community action on injury prevention should take into account the applications of telematics in the health sector; whereas, in particular, implementation of this programme should be closely coordinated with projects of common interest under the programme for the telematic interchange of data between administrations (IDA); (16) Whereas cooperation with international organisations competent in the field of public health and with third countries should be fostered; (17) Whereas this programme should be of five-year duration in order to allow sufficient time to achieve the objectives set; (18) Whereas, in order to increase the value and impact of this programme, a continuous evaluation of the actions undertaken should be carried out, with particular regard to their effectiveness and the achievement of the objectives set; (19) Whereas it should be possible to adjust or modify this programme in the light of its evaluation and of any developments that may take place in the general context of Community action in the field of public health; (20) Whereas it is important that the Commission should ensure implementation of this programme in close cooperation with the Member States; (21) Whereas a modus vivendi (8) between the European Parliament, the Council and the Commission concerning the implementing measures for acts adopted in accordance with the procedure laid down in Article 189b of the Treaty was reached on 20 December 1994; (22) Whereas this Decision lays down, for the entire duration of this programme, a financial framework constituting the principal point of reference, within the meaning of point 1 of the Declaration of the European Parliament, the Council and the Commission of 6 March 1995 (9), for the budgetary authority during the annual budgetary procedure, HAVE DECIDED AS FOLLOWS: Article 1 Objective of the programme 1. A programme of Community action on injury prevention, hereinafter referred to as 'this programme`, is hereby adopted for the period from 1 January 1999 to 31 December 2003 in the framework for action in the field of public health. 2. The aim of this programme shall be to contribute to public health activities which seek to reduce the incidence of injuries, particularly injuries caused by home and leisure accidents, by promoting: (a) the epidemiological monitoring of injuries by means of a Community system for the collection of data and the exchange of information on injuries based on strengthening and improving on the achievements of the former EHLASS system; (b) information exchanges on the use of those data to contribute to the definition of priorities and better prevention strategies. 3. The Community system referred to in paragraph 2(a) and the specific action referred to in paragraph 2(b) to be implemented under this programme are set out in the Annex. Article 2 Implementation 1. The Commission shall ensure, in close cooperation with Member States, the implementation of the Community system and the specific action set out in the Annex, in accordance with Article 5. 2. The Commission shall cooperate with institutions and organisations active in the field of injury prevention. Article 3


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Consistency and complementarity The Commission shall ensure that there is consistency and complementarity between the Community system and the specific action to be implemented under this programme and the actions implemented under other Community programmes, actions and initiatives, particularly in the field of industrial accidents, road safety, product safety and civil protection. Article 4 Financing 1. The financial framework for the implementation of this programme for the period referred to in Article 1 is hereby set at EUR 14 million. 2. The annual appropriations shall be authorised by the budgetary authority within the limits of the financial perspective. Article 5 Committee 1. The Commission shall be assisted by a committee composed of the representatives of the Member States and chaired by the representative of the Commission. 2. The representative of the Commission shall submit to the committee a draft of the measures to be taken concerning: (a) the committee's rules of procedure; (b) an annual work programme indicating the priorities for action; (c) the arrangements, procedures and specifications regarding content and finance necessary to ensure the implementation of the Community system set out in Part A of the Annex, including those relating to the participation of the countries referred to in Article 6(2); (d) the arrangements, criteria and procedures for selecting and financing projects for the implementation of the specific action set out in Part B of the Annex, including those involving cooperation with international organisations competent in the sphere of public health and participation of the countries referred to in Article 6(2); (e) follow-up and evaluation procedure; (f) the procedures for coordination with programmes and initiatives which are of direct relevance to achievement of the aim of this programme; (g) the arrangements for cooperating with the institutions and organisations referred to in Article 2(2). The committee shall deliver its opinion on the draft measures referred to above within a time limit which the chairman may lay down according to the urgency of the matter. The opinion shall be delivered by the majority laid down in Article 148(2) of the Treaty in the case of decisions which the Council is required to adopt on a proposal from the Commission. The votes of the representatives of the Member States within the committee shall be weighted in the manner set out in that Article. The chairman shall not vote. The Commission shall adopt measures which shall apply immediately. However, if these measures are not in accordance with the opinion of the committee, they shall be communicated by the Commission to the Council forthwith. In that event: - the Commission shall defer application of the measures which it has decided for a period of two months from the date of such communication, - the Council, acting by a qualified majority, may take a different decision within the time limit referred to in the first indent. 3. In addition, the Commission may consult the committee on any other matter concerning the implementation of this programme. The representative of the Commission shall submit to the committee a draft of the measures to be taken. The committee shall deliver its opinion on the draft within a time limit which the chairman may lay down according to the urgency of the matter, if necessary by taking a vote. The opinion shall be recorded in the minutes; in addition, each Member State shall have the right to ask to have its position recorded in the minutes. The Commission shall take the utmost account of the opinion delivered by the committee. It shall inform the committee of the manner in which its opinion has been taken into account. 4. The representative of the Commission shall keep the committee regularly informed of: - financial assistance granted under this programme (amount, duration, breakdown and beneficiaries), - Commission proposals or Community initiatives and the implementation of programmes in other fields which are of direct relevance to achievement of the objective of this programme, so as to ensure consistency and complementarity as referred to in Article 3.


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Article 6 International cooperation 1. Subject to Article 228 of the Treaty, in the course of implementing this programme, cooperation with third countries and with international organisations competent in the sphere of public health shall be encouraged and implemented as regards the specific action covered by Part B of the Annex in accordance with the procedure laid down in Article 5. 2. This programme shall be open to participation by the associated countries of central and eastern Europe, in accordance with the conditions laid down in the Association Agreements or Additional Protocols relating thereto concerning participation in Community programmes. This programme shall be open to participation by Cyprus and Malta on the basis of additional appropriations in accordance with the same rules as those applied to the countries of the European Free Trade Association (EFTA), under procedures to be agreed with those two countries. Article 7 Monitoring and evaluation 1. In the implementation of this Decision, the Commission shall take the measures necessary to ensure the monitoring and continuous evaluation of this programme, taking account of the aim set out in Article 1. 2. The Commission shall submit an interim report to the European Parliament and to the Council during the third year of operation of this programme and a final report upon completion of this programme. It shall incorporate into these two reports information on Community financing within the framework of this programme and on consistency and complementarity with the programmes, actions and initiatives referred to in Article 3, as well as the results of the evaluation referred to in paragraph 1 of this Article. Those reports shall also be submitted to the Economic and Social Committee and the Committee of the Regions. The interim report should also take account of developments occurring within the framework for Community action in the field of public health. 3. On the basis of the interim report referred to in paragraph 2, the Commission may, if necessary, make appropriate proposals for modifications or adjustments to this programme. Done at Brussels, 8 February 1999. For the European Parliament The President J. M. GIL-ROBLES For the Council The President O. LAFONTAINE (1) OJ C 202, 2. 7. 1997, p. 20, and OJ C 154, 19. 5. 1998, p.14. (2) OJ C 19, 21. 1. 1998, p. 1. (3) OJ C 379, 15. 12. 1997, p. 44. (4) Opinion of the European Parliament of 11 March 1998 (OJ C 104, 6. 4. 1998, p. 119), Council Common Position of 23 November 1998 (OJ C 404, 23. 12. 1998, p. 21) and Decision of the European Parliament of 16 December 1998 (not yet published in the Official Journal). Council Decision of 25 January 1999. (5) OJ L 331, 21. 12. 1994, p. 1. (6) OJ L 281, 23. 11. 1995, p. 31. (7) OJ L 193, 22. 7. 1997, p. 1. (8) OJ C 102, 4. 4. 1996, p. 1. (9) OJ C 102, 4. 4. 1996, p. 4. ANNEX THE COMMUNITY SYSTEM AND THE SPECIFIC ACTION TO BE IMPLEMENTED TO ACHIEVE THE OBJECTIVE REFERRED TO IN ARTICLE 1(2) A. COMMUNITY INJURY DATA-COLLECTION AND INFORMATION-EXCHANGE SYSTEM 1. The objective of the Community data collection and information exchange system on injuries, hereinafter referred to as 'the system`, will be to collect information on injuries, particularly those resulting from home and


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leisure accidents. 2. The system will be implemented by recourse principally to telematic means and in particular to the telematic network Euphin (European Union Public Health Information Network), developed under the projects of common interest within the programme for the telematic interchange of data between administrations (IDA). 3. The system will be developed on the basis of the experience acquired with, and the assessment made of, the earlier EHLASS system. 4. The data will be collected, in accordance with the collection systems submitted for that purpose by the Member States, from hospitals and/or other appropriate establishments and services, and by means of surveys. The collection and transmission of data to the information system will be carried out under the responsibility of the Member States, which shall seek to ensure the reliability of sources. 5. Special attention must be given to: - the methodology of the collection of data for the purposes of comparability and compatibility, - the criteria for the representativity of data, - guaranteeing the quality of data. 6. The data must be codified, using an approach based on the common criteria of the coding manual of the earlier EHLASS system. 7. The arrangements for access to the system by the various organisations and associations will be established within the framework of the implementation of this programme. B. SPECIFIC ACTION ON EPIDEMIOLOGICAL MONITORING OF INJURIES AND EXCHANGES OF INFORMATION The objective of this specific action is to encourage, strengthen and support the creation of Community networks concerning the epidemiology of injuries and exchanges of information devoted in particular to the following functions: - promoting concerted approaches to all technical and methodological aspects, in particular codes and definitions and the collection of data, - making comparable and compatible data available to the system and communicating them to it, - examining the coverage provided by existing data-collection systems and, if necessary, studying measures intended to improve that coverage; contributing to the identification of survey requirements, - promoting the creation of a database that includes the results of the surveys, - carrying out the collection, processing and dissemination of information, - facilitating the identification of dangerous products, - developing new approaches to and innovative methods of dealing with problems, - analysing risk factors and prevention strategies. End of the document


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ANNEX II

Decision No 1295/1999/EC of the European Parliament and of the Council of 29 April 1999 adopting a programme of Community action on rare diseases within the framework for action

in the field of public health (1999 to 2003)

Text: DECISION No 1295/1999/EC OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL of 29 April 1999 adopting a programme of Community action on rare diseases within the framework for action in the field of public health (1999 to 2003) THE EUROPEAN PARLIAMENT AND THE COUNCIL OF THE EUROPEAN UNION, Having regard to the Treaty establishing the European Community, and in particular Article 129 thereof, Having regard to the proposal from the Commission(1), Having regard to the opinion of the Economic and Social Committee(2), Having regard to the opinion of the Committee of the Regions(3), Acting in accordance with the procedure laid down in Article 189b of the Treaty(4), in the light of the joint text approved by the Conciliation Committee on 4 February 1999, (1) Whereas Community measures must relate to the prevention of diseases and Community action may contribute unique added value to the treatment of problems the scale of which in individual countries is too small to allow the necessary analysis or effective intervention; (2) Whereas, for the purposes of this programme, rare diseases, including those of genetic origin, are life-threatening or chronically debilitating diseases which are of such low prevalence that special combined efforts are needed to address them so as to prevent significant morbidity or perinatal or early mortality or a considerable reduction in an individual's quality of life or socio-economic potential; (3) Whereas, as a guide, low prevalence can be understood as meaning prevalence which is generally recognised as less than 5 per 10000 in the Community; (4) Whereas the very fact of the rarity of low-prevalence diseases and conditions and the lack of information about them may mean that people affected by such diseases and conditions do not benefit from the health resources and services which they need; (5) Whereas the number of people affected by individual rare diseases is, by definition, relatively small in comparison with more commonplace disorders; whereas, however, these diseases taken together are quite prevalent and affect a significant percentage of the general population; (6) Whereas rare diseases are considered to have little impact on society as a whole owing to their low prevalence individually; whereas, however, they pose serious difficulties for sufferers and their families; (7) Whereas understanding of rare diseases needs to be improved, since they may constitute danger signs from a public health perspective; (8) Whereas, in accordance with Article 3(o) of the Treaty, Community activities are to include a contribution to the attainment of a high level of health protection; (9) Whereas Article 129 of the Treaty expressly provides for Community competence in this field insofar as the Community contributes by encouraging cooperation between the Member States and, if necessary, lending support to their action, promoting coordination of their policies and programmes, and fostering cooperation with third countries and the competent international organizations in the sphere of public health; whereas Community action should be directed towards the prevention of diseases and the promotion of health education and information; (10) Whereas Community action should aim to improve the quality of life of all citizens of the Union; (11) Whereas, by helping to improve knowledge and understanding of rare diseases and foster a wider dissemination of information about them and by developing actions complementary to other Community programmes and actions and to initiatives which are of direct relevance to achievement of the objective of this programme, while avoiding unnecessary duplication, the programme will contribute to the achievement of the Community objectives set out in Article 129 of the Treaty; (12) Whereas an action programme on rare diseases should be undertaken as part of a coherent overall approach which includes initiatives in the sphere of orphan drugs and medical research; (13) Whereas rare diseases have been identified as a priority area for Community action in the Commission's communication of 24 November 1993 on the framework for action in the field of public health; (14) Whereas, in its Resolution of 16 January 1996 on the medium-term social action programme 1995-1997(5), the European Parliament asked the Commission to present, under the proper procedures, the action programme for rare diseases provided for in that communication;


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(15) Whereas, in accordance with the principle of subsidiarity, action on matters which do not fall within the exclusive competence of the Community, such as action on rare diseases, should be undertaken by the Community only if and insofar as, by reason of its scale or effects, its objectives can be better achieved by the Community; (16) Whereas the Community is in a position to provide added value to the actions of Member States concerning rare diseases through the coordination of national measures, the dissemination of information and experience, the joint establishment of priorities, the development of networking as appropriate, selection of Community-wide projects and the motivation and mobilisation of all involved, in particular health professionals, researchers and persons directly or indirectly affected by such diseases; (17) Whereas the creation of a coherent and complementary European information network on rare diseases and access to it should be promoted as soon as possible from the start of this programme onwards, using the existing data bases, among other things; (18) Whereas cooperation with international organisations competent in the sphere of public health, in particular the World Health Organisation (WHO), and with third countries, should be fostered, as well as transnational collaboration between voluntary support groups for those directly or indirectly affected by rare diseases; (19) Whereas the high level of technology currently available can contribute significantly to the acquisition of better knowledge and understanding of, and the wider dissemination of information about, rare diseases, as stated above; whereas this technology should be used to enhance the achievement of the objectives and actions envisaged under the programme; whereas an action programme on rare diseases should be undertaken as part of a coherent overall approach which includes initiatives in the sphere of orphan drugs, the commercial profitability of which could be insufficient, and medical research; (20) Whereas the systematic collection of health data is carried out within the framework of the programme of Community action on health monitoring (1997 to 2001) adopted by Decision No 1400/97/EC of the European Parliament and of the Council(6); whereas a regular exchange of information and data must therefore be ensured between this programme and that programme of Community action on health monitoring; (21) Whereas this programme should last five years in order to allow sufficient time to implement measures to achieve the objectives set; (22) Whereas, in order to increase the value and impact of the programme, there should be continuous assessment of the measures taken, with particular regard to their effectiveness and the achievement of the objectives set; (23) Whereas it should be possible to adjust or modify this programme in the light of its evaluation and of any developments that may take place in the general context of the Community framework for action in the field of public health; (24) Whereas the introduction of specific Community arrangements should help to ensure that Member States are swiftly informed in the event of an emergency situation, so that the protection of the population can be ensured; (25) Whereas these Community arrangements for the rapid exchange of information will not affect the Member States' rights and obligations under treaties or bilateral and multilateral conventions; (26) Whereas it is important that the Commission should ensure implementation of this programme in close cooperation with the Member States; (27) Whereas a modus vivendi(7) between the European Parliament, the Council and the Commission concerning the implementing measures for acts adopted in accordance with the procedure laid down in Article 189b of the Treaty was reached on 20 December 1994; (28) Whereas this Decision lays down, for the entire duration of the programme, a financial framework constituting the principal point of reference, within the meaning of point 1 of the Declaration of the European Parliament, the Council and the Commission of 6 March 1995(8), for the budgetary authority during the annual budgetary procedure, HAVE DECIDED AS FOLLOWS: Article 1 Duration and aim of the programme 1. A programme of Community action on rare diseases, including genetic diseases, hereinafter referred to as "this programme", is hereby adopted for the period from 1 January 1999 to 31 December 2003 within the framework for action in the field of public health. 2. The aim of this programme is to contribute, in coordination with other Community measures, towards ensuring a high level of health protection in relation to rare diseases by improving knowledge, for example by promoting the setting-up of a coherent and complementary European information network on rare diseases, and facilitating access to information about these diseases, in particular for health professionals, researchers and those affected directly or indirectly by these diseases, by encouraging and strengthening transnational cooperation between voluntary and professional support groups for those concerned, and by ensuring optimum handling of clusters and by promoting the surveillance of rare diseases. 3. The actions to be implemented under this programme are set out in the Annex.


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Article 2 Implementation 1. The Commission shall ensure implementation of the actions set out in the Annex in close cooperation with the Member States, in accordance with Article 5. 2. The Commission shall cooperate with institutions and organisations active in the field of rare diseases. Article 3 Consistency and complementarity The Commission shall ensure that there is consistency and complementarity between the actions to be implemented under this programme and with those implemented under other Community programmes and actions, in particular in the sphere of public health, on the one hand, and initiatives in the sphere of orphan drugs and medical research, on the other. Article 4 Budget 1. The financial framework for the implementation of this programme for the period referred to in Article 1 is hereby set at EUR 6,5 million. 2. The annual appropriations shall be authorized by the budgetary authority within the limits of the financial perspective. Article 5 Committee 1. The Commission shall be assisted by a committee consisting of two representatives of each Member State and chaired by a representative of the Commission. 2. The representative of the Commission shall submit to the committee a draft of the measures to be taken concerning: (a) the committee's rules of procedure; (b) an annual work programme indicating the priorities for action; (c) the arrangements, criteria and procedures for selecting and financing projects under this programme, including those involving cooperation with international organisations competent in the sphere of public health and participation of the countries referred to in Article 6(2); (d) the evaluation procedure; (e) the arrangements for dissemination and transfer of results; (f) the procedures for coordination with programmes and initiatives which are of direct relevance to achievement of the aim of this programme; (g) the arrangements for cooperating with the institutions and organisations referred to in Article 2(2). The committee shall deliver its opinion on the draft measures referred to above within a time limit which the chairman may lay down according to the urgency of the matter. The opinion shall be delivered by the majority laid down in Article 148(2) of the Treaty in the case of decisions which the Council is required to adopt on a proposal from the Commission. The votes of the representatives of the Member States within the committee shall be weighted in the manner set out in that Article. The chairman shall not vote. The Commission shall adopt measures which shall apply immediately. However, if these measures are not in accordance with the opinion of the committee, they shall be communicated by the Commission to the Council forthwith. In that event: - the Commission shall defer application of the measures which it has decided upon for a period of two months from the date of such communication, - the Council, acting by a qualified majority, may take a different decision within the time limit laid down in the preceding indent. 3. In addition, the Commission may consult the committee on any other matter concerning the implementation of this programme. The representative of the Commission shall submit to the committee a draft of the measures to be taken. The committee shall deliver its opinion on the draft within a time limit which the chairman may lay down according to the urgency of the matter, if necessary by taking a vote. The opinion shall be recorded in the minutes; in addition, each Member State shall have the right to ask to have its position recorded in the minutes. The Commission shall take the utmost account of the opinion delivered by the committee. It shall inform the committee of the manner in which its opinion has been taken into account. 4. The representative of the Commission shall keep the committee regularly informed of: - financial assistance granted under this programme (amount, duration, breakdown and beneficiaries), - Commission proposals or Community initiatives and the implementation of programmes in other fields which are


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of direct relevance to achievement of the objective of this programme, so as to ensure consistency and complementarity as referred to in Article 3. Article 6 International cooperation 1. Subject to Article 228 of the Treaty, in the course of implementing this programme, cooperation with third countries and with international organisations competent in the sphere of public health, in particular the World Health Organisation (WHO), shall be encouraged and implemented as regards the actions covered by this programme in accordance with the procedure laid down in Article 5. 2. This programme shall be open to participation by the associated countries of central Europe, in accordance with the conditions laid down in the Association Agreements or Additional Protocols relating thereto concerning participation in Community programmes. This programme shall be open to participation by Cyprus and Malta on the basis of additional appropriations in accordance with the same rules as those applied to the countries of the European Free Trade Association (EFTA), in accordance with procedures to be agreed with those two countries. Article 7 Monitoring and evaluation 1. In the implementation of this Decision, the Commission shall take the necessary measures to ensure the monitoring and continuous evaluation of this programme, taking account of the aim set out in Article 1. 2. The Commission shall submit an interim report to the European Parliament and to the Council during the third year of this programme and a final report upon completion of this programme. It shall incorporate into these two reports information on Community financing in the various fields of action and on consistency and complementarity with the other actions referred to in Article 3, as well as the results of the evaluation referred to in paragraph 1 of this Article. The reports shall also be submitted to the Economic and Social Committee and the Committee of the Regions. The interim report should also take account of developments occurring within the framework for Community action in the field of public health. 3. On the basis of the interim report referred to in paragraph 2, the Commission may, if necessary, make appropriate proposals for modifications or adjustments to this programme. Done at Luxembourg, 29 April 1999. For the European Parliament The President J. M. GIL-ROBLES For the Council The President W. MÜLLER (1) OJ C 203, 3.7.1997, p. 6, and OJ C 160, 27.5.1998, p. 8. (2) OJ C 19, 21.1.1998, p. 4. (3) OJ C 64, 27.2.1998, p. 96. (4) Opinion of the European Parliament of 11 March 1998 (OJ C 104, 6.4.1998, p. 133), Council Common Position of 30 April 1998 (OJ C 227, 20.7.1998, p. 1) and Decision of the European Parliament of 8.10.1998 (OJ C 328, 26.10.1998, p. 148). Decision of the Council of 22 April 1999 and Decision of the European Parliament of 14 April 1999. (5) OJ C 32, 5.2.1996, p. 24. (6) OJ L 193, 22.7.1997, p. 1. (7) OJ C 102, 4.4.1996, p. 1. (8) OJ C 102, 4.4.1996, p. 4. ANNEX ACTIONS 1. Promote the development of, and access to, a coherent and complementary European information network on rare diseases, using the existing databases, among other things. The information is to comprise entries listing the disease name, synonyms, a general description of the disorder, symptoms, causes, epidemiological data, preventive


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measures, standard treatments, clinical trials, diagnostic laboratories and specialised consultations, research programmes and a list of sources that can be contacted for further information about the condition. The availability of this information must be made as widely known as possible, including via the Internet. 2. Contribute to training and refresher courses for professionals in order to improve early detection, recognition, intervention and prevention in the field of rare diseases. 3. Promote transnational collaboration and networking between groups of persons directly or indirectly affected by the same rare conditions or volunteers and professionals involved and coordination at Community level in order to encourage continuity of work and trans-national cooperation. 4. Support at Community level the monitoring of rare diseases in the Member States and early warning systems for clusters, and promote the networking and training of experts concerned with the handling of rare diseases and with rapid response to the phenomenon of clusters. Joint declaration of the European Parliament, the Council and the Commission The European Parliament, the Council and the Commission declare that, among the priority issues to be addressed with the framework of the future programme on public health, they will pay particular attention to rare diseases and pollution-related diseases and will duly take account of the budgetary implications. Commission declaration The Commission undertakes to inform the European Parliament annually on the decisions taken to implement this programme. End of the document


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ANNEX III

Decision No 521/2001/EC of the European Parliament and of the Council of 26 February 2001 extending certain programmes of Community action in the field of public health adopted by

Decisions No 645/96/EC, No 646/96/EC, No 647/96/EC, No 102/97/EC, No 1400/97/EC and No 1296/1999/EC and amending those Decisions

Text: Decision No 521/2001/EC of the European Parliament and of the Council of 26 February 2001 extending certain programmes of Community action in the field of public health adopted by Decisions No 645/96/EC, No 646/96/EC, No 647/96/EC, No 102/97/EC, No 1400/97/EC and No 1296/1999/EC and amending those Decisions THE EUROPEAN PARLIAMENT AND THE COUNCIL OF THE EUROPEAN UNION, Having regard to the Treaty establishing the European Community, and in particular Article 152 thereof, Having regard to the proposal from the Commission(1), Having regard to the opinion of the Economic and Social Committee(2), Having consulted the Committee of the Regions, Acting in accordance with the procedure laid down in Article 251 of the Treaty(3), Whereas: (1) A number of programmes of Community action within the framework for action in the field of public health are to expire shortly. (2) The following expire at the end of 2000: - the programme of Community action on health promotion, information, education and training, adopted by Decision No 645/96/EC of the European Parliament and of the Council(4), - the action plan to combat cancer, adopted by Decision No 646/96/EC of the European Parliament and of the Council(5), - the programme of Community action on the prevention of AIDS and certain other communicable diseases, adopted by Decision No 647/96/EC of the European Parliament and of the Council(6), - the programme of Community action on the prevention of drug dependence, adopted by Decision No 102/97/EC of the European Parliament and of the Council(7). (3) The following expire at the end of 2001: - the programme of Community action on health monitoring, adopted by Decision No 1400/97/EC of the European Parliament and of the Council(8), - the programme of Community action on pollution-related diseases, adopted by Decision No 1296/1999/EC of the European Parliament and of the Council(9). (4) In its Resolution of 8 June 1999 on the future Community action in the field of public health(10), the Council stressed the need for continuity of Community action in the field of public health in the light of the perspective of expiry of existing programmes. (5) In its Communication of 15 April 1998 to the European Parliament, the Council, the Economic and Social Committee and the Committee of the Regions on the development of public health policy in the European Community, the Commission indicated that existing public health programmes will be coming to an end from the end of year 2000 onwards and stressed that there is a need to ensure that there is no vacuum in Community policy in this important field. The subsequent debate on that communication resulted in a consensus among the Community institutions in favour of developing a new health strategy with an overall public health programme of action. (6) While a new strategy and proposals for a new, overall, public health programme are being considered, the present programmes in the public health area should be extended until the end of 2002 in order to avoid any interruption in the Community action concerned. (7) For the programmes which are due to expire on 31 December 2000, provision should be made for a two-year extension over two successive years for the period from 1 January 2001 to 31 December 2001 and for the period from 1 January 2002 to 31 December 2002, respectively, and for the annual division of the financial framework implementing the programmes in question. (8) In order to ensure a smooth and effective transition of Community actions from the existing programmes to the overall programme for health being adopted, this Decision for an extension should ensure, in specifying the


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extension of the financial framework of the programmes, a balanced distribution of financial aid among the action programmes. (9) This Decision should be repealed from the date of entry into force of a new Decision of the European Parliament and of the Council adopting a Community action programme in the field of public health. (10) The Agreement on the European Economic Area (EEA) provides for greater cooperation in the field of public health between the Community and its Member States, on the one hand, and the countries of the European Free Trade Association participating in the EEA (EFTA/EEA countries), on the other. Provision should also be made to open the programmes in the field of public health to participation of the associated central and eastern European countries in accordance with the conditions established in the Europe Agreements, in their additional protocols and in the decisions of the respective Association Councils, of Cyprus, funded by additional appropriations in accordance with the procedures to be agreed with that country, as well as of Malta and Turkey, funded by additional appropriations, in accordance with the provisions of the Treaty. (11) In extending the programmes, account should be taken of the communication of 15 June 2000 from the Commission to the European Parliament, the Council, the Economic and Social Committee and the Committee of the Regions, on the health strategy of the European Community, the Council Conclusions of 26 November 1998 on the future framework for Community action in the field of public health(11), the Council Resolution of 8 June 1999 on the future Community action in the field of public health(12), the European Parliament Resolution of 10 March 1999(13), the opinion of the Economic and Social Committee of 9 September 1998(14) and the opinion of the Committee of the Regions of 19 November 1998(15). Account should also be taken of the interim report from the Commission of 14 October 1999 to the European Parliament, the Council, the Economic and Social Committee and the Committee of the Regions on the implementation of the programmes of Community action on the prevention of cancer, AIDS and certain other communicable diseases, and drug dependence within the framework for action in the field of public health, and the interim report from the Commission of 22 March 2000 to the European Parliament, the Council, the Economic and Social Committee and the Committee of the Regions on the implementation of the programme of Community action on health promotion, information, education and training (1996-2000). (12) This Decision lays down, for the period of extension of the action programmes, a financial framework constituting the prime reference, within the meaning of point 33 of the Interinstitutional Agreement of 6 May 1999 between the European Parliament, the Council and the Commission on budgetary discipline and improvement of the budgetary procedure(16), for the budgetary authority during the annual budgetary procedure. (13) Decisions No 645/96/EC, No 646/96/EC, No 647/96/EC, No 102/97/EC, No 1400/97/EC and No 1296/1999/EC should be amended to take account of Council Decision 1999/468/EC of 28 June 1999 laying down the procedures for the exercise of implementing powers conferred on the Commission(17). (14) The action programmes should be monitored and continuously evaluated by the Commission acting in cooperation with the Member States, HAVE DECIDED AS FOLLOWS: Article 1 Decision No 645/96/EC is hereby amended as follows: 1. in Article 1(1) the date "31 December 2000" shall be replaced by "31 December 2002"; 2. in Article 2(1) the words "in accordance with Article 5" shall be replaced by the words "in accordance with the procedures laid down in Article 5a(2) and (3)"; 3. Article 3(1) shall be replaced by the following: "1. The financial framework for the implementation of the programme for the period from 1 January 1996 to 31 December 2000 shall be EUR 35 million, for the period from 1 January 2001 to 31 December 2001, EUR 7,27 million, and for the period from 1 January 2002 to 31 December 2002, EUR 7,27 million."; 4. Article 5 shall be replaced by the following: "Article 5 Implementing measures The measures necessary for the implementation of this Decision, relating to the matters referred to below shall be adopted in accordance with the management procedure referred to in Article 5a(3): (a) an annual work programme indicating the priorities for action; (b) the arrangements, criteria and procedures for selecting and financing projects under the programme, including those involving cooperation with international organisations competent in the field of public health and participation of the countries referred to in Article 6(2); (c) the evaluation procedure; (d) the arrangements for dissemination and transfer of results; (e) the arrangements for cooperating with the institutions and organisations referred to in Article 2(2). The necessary measures for implementing this Decision as regards other matters shall be adopted in accordance with the advisory procedure referred to in Article 5a(2).";


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5. the following Article shall be inserted: "Article 5a Committee 1. The Commission shall be assisted by a Committee. 2. Where reference is made to this paragraph, Articles 3 and 7 of Decision 1999/468/EC shall apply, having regard to the provisions of Article 8 thereof. 3. Where reference is made to this paragraph, Articles 4 and 7 of Decision 1999/468/EC shall apply, having regard to the provisions of Article 8 thereof. The period laid down in Article 4(3) of Decision 1999/468/EC shall be set at two months. 4. The Committee shall adopt its rules of procedure."; 6. in Article 6: (a) in paragraph 1 the words "in accordance with the procedure laid down in Article 5" shall be replaced by the words "in accordance with the procedures laid down in Article 5a(2) and (3)"; (b) paragraph 2 shall be replaced by the following: "2. This programme shall be open to participation by the following countries: (a) the EFTA/EEA countries in accordance with the conditions provided for in the EEA Agreement; (b) the associated countries of central and eastern Europe in accordance with the conditions laid down in the Europe Agreements, the Additional Protocols to these Agreements and the decisions of the relevant Association Councils; (c) Cyprus which shall be funded by additional appropriations, in accordance with procedures to be agreed with this country; (d) Malta and Turkey which shall be funded by additional appropriations in accordance with the provisions of the Treaty."; 7. Article 7 shall be replaced by the following: "Article 7 Monitoring and evaluation 1. In implementing this Decision the Commission, acting in cooperation with the Member States, shall take all the necessary measures to ensure the monitoring and evaluation of the actions of the programme, as provided for in Article 1. 2. The Commission shall submit to the European Parliament and the Council an interim report in July 1998 and a final report upon completion of the programme. These reports shall include the results of the evaluation referred to in paragraph 1. These reports shall also be submitted to the Economic and Social Committee and the Committee of the Regions." Article 2 Decision No 646/96/EC is hereby amended as follows: 1. in Article 1(1) the date "31 December 2000" shall be replaced by "31 December 2002"; 2. in Article 2(1) the words "in accordance with the procedures laid down in Article 5" shall be replaced by the words "in accordance with the procedures laid down in Article 5a(2) and (3)"; 3. Article 3(1) shall be replaced by the following: "1. The financial framework for implementation of this plan for the period from 1 January 1996 to 31 December 2000 shall be EUR 64 million, for the period from 1 January 2001 to 31 December 2001 EUR 13,3 million and for the period from 1 January 2002 to 31 December 2002 EUR 13,3 million."; 4. Article 5 shall be replaced by the following: "Article 5 Implementing measures The necessary measures for implementing this Decision, relating to the matters referred to below, shall be adopted in accordance with the management procedure referred to in Article 5a(3): (a) an annual work programme indicating the priorities for action; (b) the simplification and improvement of this plan's basic administrative procedures, which shall be duly published; (c) the arrangements, criteria and procedures for selecting and financing projects under this action plan, including those involving cooperation with international organisations competent in the field of public health and participation of the countries referred to in Article 6(2); (d) the evaluation procedure; (e) the arrangements for the dissemination and transfer of results; (f) the arrangements for cooperating with the institutions and organisations referred to in Article 2(2). The necessary measures for the implementation of this Decision as regards other matters shall be adopted in accordance with the advisory procedure referred to in Article 5a(2)."; 5. the following Article shall be inserted: "Article 5a


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Committee 1. The Commission shall be assisted by a Committee. 2. Where reference is made to this paragraph, Articles 3 and 7 of Decision 1999/468/EC shall apply, having regard to the provisions of Article 8 thereof. 3. Where reference is made to this paragraph, Articles 4 and 7 of Decision 1999/468/EC shall apply, having regard to the provisions of Article 8 thereof. The period laid down in Article 4(3) of Decision 1999/468/EC shall be set at two months. 4. The Committee shall adopt its rules of procedure."; 6. in Article 6: (a) in paragraph 1 the words "in accordance with the procedure laid down in Article 5" shall be replaced by the words "in accordance with the procedures laid down in Article 5a(2) and (3)"; (b) paragraph 2 shall be replaced by the following: "2. This plan shall be open to participation by the following countries: (a) the EFTA/EEA countries in accordance with the conditions provided for in the EEA Agreement; (b) the associated countries of central and eastern Europe in accordance with the conditions laid down in the Europe Agreements, the Additional Protocols to these Agreements and the decisions of the relevant Association Councils; (c) Cyprus which shall be funded by additional appropriations, in accordance with procedures to be agreed with this country; (d) Malta and Turkey which shall be funded by additional appropriations in accordance with the provisions set of the Treaty."; 7. Article 7(2) shall be replaced by the following: "2. The Commission shall submit to the European Parliament and the Council an interim report in July 1998 and a final report upon completion of this plan. The reports shall highlight, in particular, the complementarity between this action and others provided for in Article 4. The Commission shall incorporate into these reports the results of the evaluations. It shall also send the reports to the Economic and Social Committee and the Committee of the Regions." Article 3 Decision No 647/96/EC is hereby amended as follows: 1. in Article 1(1) the date "31 December 2000" shall be replaced by "31 December 2002"; 2. in Article 2(1) the words "in accordance with Article 5" shall be replaced by the words "in accordance with the procedures laid down in Article 5a(2) and (3)"; 3. Article 3(1) shall be replaced by the following: "1. The financial framework for implementation of this programme for the period from 1 January 1996 to 31 December 2000 shall be EUR 49,6 million, for the period from 1 January 2001 to 31 December 2001 EUR 10,07 million and for the period from 1 January 2002 to 31 December 2002 EUR 10,07 million."; 4. Article 5 shall be replaced by the following: "Article 5 Implementing measures The necessary measures for implementing this Decision relating to the matters referred to below shall be adopted in accordance with the management procedure referred to in Article 5a(3): (a) an annual work programme indicating priorities for action; (b) the arrangements, criteria and procedures for selecting and financing projects under this programme, including those involving cooperation with the international organisations competent in the field of public health and participation of the countries referred to in Article 6(2); (c) the evaluation procedure; (d) the arrangements for dissemination and transfer of results; (e) the arrangements for cooperating with the institutions and organisations referred to in Article 2(2). The necessary measures for the implementation of this Decision as regards other matters shall be adopted in accordance with the advisory procedure referred to in Article 5a(2)."; 5. the following Article shall be inserted: "Article 5a Committee 1. The Commission shall be assisted by a Committee. 2. Where reference is made to this paragraph, Articles 3 and 7 of Decision 1999/468/EC shall apply, having regard to the provisions of Article 8 thereof. 3. Where reference is made to this paragraph, Articles 4 and 7 of Decision 1999/468/EC shall apply, having regard to the provisions of Article 8 thereof. The period laid down in Article 4(3) of Decision 1999/468/EC shall be set at two months. 4. The Committee shall adopt its rules of procedure.";


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6. in Article 6: (a) in paragraph 1 the words "in accordance with the procedure laid down in Article 5" shall be replaced by the words "in accordance with the procedures laid down in Article 5a(2) and (3)"; (b) paragraph 2 shall be replaced by the following: "2. This programme shall be open to participation by the following countries: (a) the EFTA/EEA countries in accordance with the conditions provided for in the EEA Agreement; (b) the associated countries of central and eastern Europe in accordance with the conditions laid down in the Europe Agreements, the Additional Protocols to these Agreements and the decisions of the relevant Association Councils; (c) Cyprus which shall be funded by additional appropriations, in accordance with procedures to be agreed with this country; (d) Malta and Turkey which shall be funded by additional appropriations in accordance with the provisions of the Treaty."; 7. Article 7(2) shall be replaced by the following: "2. The Commission shall submit to the European Parliament and the Council an interim report in July 1998 and a final report upon completion of this programme. It shall incorporate into these reports the results of the evaluations. It shall also send the reports to the Economic and Social Committee and the Committee of the Regions." Article 4 Decision No 102/97/EC is hereby amended as follows: 1. in Article 1(1) the date "31 December 2000" shall be replaced by "31 December 2002"; 2. in Article 2(1) the words "in accordance with Article 5" shall be replaced by the words "in accordance with the procedures laid down in Article 5a(2) and (3)"; 3. Article 3(1) shall be replaced by the following: "1. The financial framework for the implementation of the programme for the period from 1 January 1996 to 31 December 2000 shall be EUR 27 million, for the period from 1 January 2001 to 31 December 2001, EUR 5,38 million, and for the period from 1 January 2002 to 31 December 2002, EUR 5,38 million."; 4. Article 5 shall be replaced by the following: "Article 5 Implementing measures The measures necessary for implementing this Decision, relating to the matters referred to below, shall be adopted in accordance with the management procedure referred to in Article 5a(3): (a) an annual work programme indicating the priorities for action; (b) the arrangements, criteria and procedures for selecting and financing projects under the programme, including those involving cooperation with international organisations competent in the field of public health and participation of the countries referred to in Article 6(2); (c) the evaluation procedure; (d) the arrangements for dissemination and transfer of results; (e) the arrangements for cooperating with the institutions and organisations referred to in Article 2(2). The necessary measures for the implementation of this Decision as regards other matters shall be adopted in accordance with the advisory procedure referred to in Article 5a(2)."; 5. The following Article shall be inserted: "Article 5a Committee 1. The Commission shall be assisted by a Committee. 2. Where reference is made to this paragraph, Articles 3 and 7 of Decision 1999/468/EC shall apply, having regard to the provisions of Article 8 thereof. 3. Where reference is made to this paragraph, Articles 4 and 7 of Decision 1999/468/EC shall apply, having regard to the provisions of Article 8 thereof. The period laid down in Article 4(3) of Decision 1999/468/EC shall be set at two months. 4. The Committee shall adopt its rules of procedure."; 6. in Article 6: (a) in paragraph 1 the words "in accordance with the procedure laid down in Article 5" shall be replaced by the words "in accordance with the procedures laid down in Article 5a(2) and (3)"; (b) paragraph 2 shall be replaced by the following: "2. This programme shall be open to participation by the following countries: (a) the EFTA/EEA countries in accordance with the conditions provided for in the EEA Agreement; (b) the associated countries of central and eastern Europe in accordance with the conditions laid down in the Europe Agreements, the Additional Protocols to these Agreements and the decisions of the relevant Association Councils; (c) Cyprus which shall be funded by additional appropriations, in accordance with procedures to be agreed with this country;


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(d) Malta and Turkey which shall be funded by additional appropriations in accordance with the provisions of the Treaty."; 7. Article 7(2) shall be replaced by the following: "2. The Commission shall submit to the European Parliament and the Council an interim report in July 1998 and a final report upon completion of the programme. It shall incorporate into these reports the results of the evaluations. It shall also forward these reports to the Economic and Social Committee and the Committee of the Regions." Article 5 Decision No 1400/97/EC is hereby amended as follows: 1. in Article 1(1) the date "31 December 2001" shall be replaced by "31 December 2002"; 2. in Article 2(1) the words "in accordance with Article 5" shall be replaced by the words "in accordance with the procedures laid down in Article 5a(2) and (3)"; 3. Article 3(1) shall be replaced by the following: "1. The financial framework for the implementation of the programme for the period from 1 January 1997 to 31 December 2001 shall be EUR 13,8 million and for the period from 1 January 2002 to 31 December 2002, EUR 4,4 million."; 4. Article 5 shall be replaced by the following: "Article 5 Implementing measures The measures necessary for implementing this Decision, relating to the matters referred to below shall be adopted in accordance with the management procedure referred to in Article 5a(3): (a) an annual work programme indicating the priorities for action; (b) the arrangements, criteria and procedures for selecting and financing projects under the programme, including those involving cooperation with international organisations competent in the field of public health and participation of the countries referred to in Article 6(2); (c) the evaluation procedure; (d) the provisions applicable to reporting of the data, conversion thereof and other methods for making the data comparable in order to achieve the objective referred to in Article 1(2); (e) the arrangements for dissemination and transfer of results; (f) the arrangments for cooperating with the institutions and organisations referred to in Article 2(2); (g) the provisions for the definition and selection of indicators; (h) the provisions for the content specifications necessary for the setting up and operation of the networks. The necessary measures for the implementation of this Decision as regards other matters shall be adopted in accordance with the advisory procedure referred to in Article 5a(2)."; 5. the following Article shall be inserted: "Article 5a Committee 1. The Commission shall be assisted by a Committee. 2. Where reference is made to this paragraph, Articles 3 and 7 of Decision 1999/468/EC shall apply, having regard to the provisions of Article 8 thereof. 3. Where reference is made to this paragraph, Articles 4 and 7 of Decision 1999/468/EC shall apply, having regard to the provisions of Article 8 thereof. The period laid down in Article 4(3) of Decision 1999/468/EC shall be set at two months. 4. The Committee shall adopt its rules of procedure."; 6. in Article 6: (a) in paragraph 1 the words "in accordance with the procedure laid down in Article 5" shall be replaced by the words "in accordance with the procedures laid down in Article 5a(2) and (3)"; (b) paragraph 2 shall be replaced by the following: "2. This programme shall be open to participation by the following countries: (a) the EFTA/EEA countries in accordance with the conditions provided for in the EEA Agreement; (b) the associated countries of central and eastern Europe in accordance with the conditions laid down in the Europe Agreements, the Additional Protocols to these Agreements and the decisions of the relevant Association Councils; (c) Cyprus which shall be funded by additional appropriations, in accordance with procedures to be agreed with this country; (d) Malta and Turkey which shall be funded by additional appropriations in accordance with the provisions of the Treaty." Article 6 Decision No 1296/1999/EC is hereby amended as follows: 1. in Article 1(1) the date "31 December 2001" shall be replaced by "31 December 2002";


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2. in Article 2(1) the words "in accordance with Article 5" shall be replaced by the words "in accordance with the procedure laid down in Article 5a(2)"; 3. Article 4(1) shall be replaced by the following: "1. The financial framework for the implementation of the programme for the period from 1 January 1999 to 31 December 2001 shall be EUR 3,9 million and for the period from 1 January 2002 to 31 December 2002, EUR 1,3 million."; 4. Article 5 shall be replaced by the following: "Article 5 Implementing measures The measures necessary for implementing this Decision, relating to the matters referred to below, shall be adopted in accordance with the advisory procedure referred to in Article 5a(2): (a) the work programme; (b) the criteria and procedures for selecting and financing projects under the programme; (c) the procedure for monitoring and continuous evaluation referred to in Article 7."; 5. the following Article shall be inserted: "Article 5a Committee 1. the Commission shall be assisted by a committee. 2. Where reference is made to this paragraph, Articles 3 and 7 of Decision 1999/468/EC shall apply, having regard to the provisions of Article 8 thereof. 3. The committee shall adopt its rules of procedure." 6. in Article 6: (a) in paragraph 1 the words "in accordance with the procedure laid down in Article 5" shall be replaced by the words "in accordance with the procedure laid down in Article 5a(2)", (b) paragraph 2 shall be replaced by the following: "2. This programme shall be open to participation by the following countries: (a) the EFTA/EEA countries in accordance with the conditions provided for in the EEA Agreement; (b) the associated countries of central and eastern Europe in accordance with the conditions laid down in the Europe Agreements, the Additional Protocols to these Agreements and the decisions of the relevant Association Councils; (c) Cyprus which shall be funded by additional appropriations, in accordance with procedures to be agreed with this country; (d) Malta and Turkey which shall be funded by additional appropriations in accordance with the provisions of the Treaty." Article 7 Entry into force This Decision shall enter into force on the date of its publication in the Official Journal of the European Communities. It shall apply from 1 January 2001. Done at Brussels, 26 February 2001. For the European Parliament The President N. Fontaine For the Council The President A. Lindh (1) OJ C 365 E, 19.12.2000, p. 135. (2) Opinion delivered on 29 November 2000 (not yet published in the Official Journal). (3) Opinion of the European Parliament of 13 December 2000 (not yet published in the Official Journal) and Council Decision of 29 January 2001. (4) OJ L 95, 16.4.1996, p. 1. (5) OJ L 95, 16.4.1996, p. 9. (6) OJ L 95, 16.4.1996, p. 16. (7) OJ L 19, 22.1.1997, p. 25. (8) OJ L 193, 22.7.1997, p. 1. (9) OJ L 155, 22.6.1999, p. 7.


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(10) OJ C 200, 15.7.1999, p. 1. (11) OJ C 390, 15.12.1998, p. 1. (12) OJ C 200, 15.7.1999, p. 1. (13) OJ C 175, 21.6.1999, p. 135. (14) OJ C 407, 28.12.1998, p. 21. (15) OJ C 51, 22.2.1999, p. 53. (16) OJ C 172, 18.6.1999, p. 1. (17) OJ L 184, 17.7.1999, p. 23. End of the document


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ANNEX IV

Council Resolution of 8 June 1999 on the future Community action in the field of public health

Text: COUNCIL RESOLUTION of 8 June 1999 on the future Community action in the field of public health (1999/C 200/01) THE COUNCIL OF THE EUROPEAN UNION, 1. RECALLING the Commission's communication of 15 April 1998 on the development of public health policy in the European Community which was intended to stimulate a broad discussion at Community and national levels; 2. RECALLING its Conclusions of 26 November 1998 on the future framework for Community action in the field of public health(1) in which general principles were established; 3. TAKING NOTE of the Resolution on 10 March 1999 of the European Parliament on the communication from the Commission on the development of health policy in the European Community; 4. TAKING NOTE of the opinion of the Economic and Social Committee of 9 September 1998 and of the Committee of the Regions of 19 November 1998 on the communication from the Commission on the development of public health policy in the European Community; 5. TAKING NOTE of the results of the Conference on the new public health policy of the European Union held at Potsdam on 27 to 29 January 1999 as a positive contribution to the debate on the development of the future Community action in the field of public health; 6. STRESSES that the future Community action - directed towards improving public health, preventing human illness and diseases and obviating sources of danger to human health - must address in a coordinated an coherent way the concerns of the Community's citizens about risks to their health and their expectations for a high level of health; 7. CONSIDERS it necessary that all health-related activities in the Community have a high degree of visibility and transparency, in order to promote a better knowledge and thus enable a larger involvement of citizens; 8. EMPHASISES that a high level of human health protection is increasingly important in view of the health challenges the Member States and the European Union will face in the forthcoming millennium; 9. CONSIDERS that key challenges include emerging and re-emerging threats to health; major health scourges; genetic, behavioural and environmental determinants of health; growing health inequalities; quality assurance; demographic changes and the impact of ageing; social, economic and political factors; the advances in research and the application and proliferation of new technologies, in particular biotechnology; 10. UNDERLINES that the Community should be properly equipped to meet these challenges; this requires both developing, specifically within the three strands as indicated in the Council's Conclusions of 26 November 1998, appropriate action and measures of added Community value, as well as appropriate scientific and administrative structures; 11. STRESSES the importance that the new programme will encourage and, if necessary, support the cooperation between Member States on appropriate issues on the key challenges and in other fields where they wish to cooperate insofar as the public health objectives of the Treaty allow; 12. CONSIDERS that over the long term, the effectiveness of Community public health action will depend to a very large degree on the availability of adequate Community resources to meet priorities and the engagement of relevant authorities in the Member States on a continuing basis; 13. UNDERLINES that existing Community networks should be evaluated as to whether they are suitable to meet the key challenges; 14. REITERATES that the development of measures in all three strands as indicated in the Council's Conclusions of 26 November 1998, should take into account the needs arising from the future enlargement of the European Union and the work of international organisations competent in the sphere of health; 15. UNDERLINES that, in order to strengthen the scientific basis, research must have an essential role in underpinning the Community's future public health action. Public health-related research at Community level, in order to be relevant for Community public health, has to respond to the specific research needs and issues identified by the public health sector whose access to research programmes should be facilitated; 16. UNDERLINES the need to establish procedures through which the Community and the Member States can monitor the impact of Community policies and activities, especially those relating to the internal market, on public health and health care, in order to facilitate an adequate balance between the impact of the internal market and the unchanged responsibilities of Member States for the organisation and delivery of health services and medical care;


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17. CONSIDERS IT APPROPRIATE that, following the entry into force of the Treaty of Amsterdam on 1 May 1999, internal organisation, cooperation and working methods at Community level should be reviewed with a view to achieving a better coordination of health-related issues so as to ensure a high level of human health protection in the definition and implementation of all Community policies and activities; 18. INVITES the Commission, as a matter of urgency and in order to ensure continuity in the light of the expiration of existing programmes, to make a proposal for a decision of the European Parliament and the Council on a programme of action in the field of public health, in time for the next Council meeting devoted to health questions. (1) OJ C 390, 15.12.1998, p. 1. End of the document


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ANNEX V

Council resolution of 18 November 1999 on the promotion of mental health

Text: Council resolution of 18 November 1999 on the promotion of mental health (2000/C 86/01) THE COUNCIL OF THE EUROPEAN UNION, 1. RECALLING the Council resolution of 2 June 1994 on the framework for Community action in the field of public health(1) where it was stated that mental diseases, which account for a very high level of morbidity and total health expenditure, must be examined forthwith with a view to identifying the kind and extent of actions that have to be undertaken at Community level in order to assist the efforts of the Member States in this area; 2. RECALLING the Commission communication of 16 April 1998 on the development of public health policy in the European Community which identified mental health as an issue to be taken into account in the future Community action in the field of public health; 3. RECALLING the Council conclusions of 26 November 1998 on the future framework for Community action in the field of public health(2) which stated that the greatest benefits for the health of EU citizens are likely to be achieved by focusing Community action, inter alia, on reducing mortality and morbidity related to general living conditions and lifestyles, with regard to both physical and mental aspects; 4. TAKING NOTE of the resolution of the European Parliament of 9 March 1999 on the Commission report on the state of women's health in the European Community which called on the Commission to improve the presently scarce data on mental health and disease in the Union and to create awareness of appropriate treatments for depressive syndromes; 5. TAKING NOTE of the joint World Health Organisation/European Commission meeting on "Balancing mental health promotion and mental health care" held in Brussels from 22 to 24 April 1999, and its conclusions entitled "There is no health without mental health"; 6. WELCOMES the European Conference on Promotion of Mental Health and Social Inclusion held in Tampere from 11 to 13 October 1999, which highlighted the importance of mental health and the need for action as a part of the Community public health strategy; 7. RECOGNISES that mental health is an indvisible part health; 8. CONSIDERS that mental health contributes significantly to quality of life, to social inclusion and to full social and economic participation; 9. UNDERLINES that mental problems and illnesses are common, cause human suffering and disability, increase mortality, and have negative implications for national economies; 10. UNDERLINES that the problems of mental health are often linked to, among other factors, unemployment, social marginalisation and exclusion, homelessness and drug and alcohol abuse; 11. RECOGNISES that there are effective methods to promote mental health and to prevent mental problems and illnesses; 12. CONSIDERS that there is a need for enhancing the value and visibility of mental health and to promote good mental health, in particular among children, young people, elderly people and at work; 13. CONSIDERS it important to cooperate with the World Health Organisation in a coordinated way on mental health issues as well as with other international organisations; 14. RECOGNISES the need for addressing the promotion of mental health in the increased cooperation with applicant countries; 15. INVITES the Member States: - to give due attention to mental health and to strengthen its promotion in their policies, - to collect good quality data on mental health and actively share it with other Member States and the Commission, - to develop and implement action to promote mental health and prevent mental illness and promote exchange of good practices and joint projects with other Member States, - to stimulate and support research on mental health and its promotion, also using the opportunities provided by the fifth framework programme of the European Community for research, technological development and demonstration activities (1998 to 2002) adopted by Decision No 182/1999/EC of the European Parliament and of


60

the Council(3); 16. INVITES the Commission: - to consider incorporating activities on the theme of mental health in the future action programme for public health, such as exchange of information and good practices, networking, - to develop and implement, as a part of the Community health monitoring system, a component for mental health and to produce a report on mental health, - to analyse the impact of Community activities on mental health, for example in the fields of education, youth policy, social affairs and employment, - to consider, after consultation of the Member states, the need to draw up a proposal for a Council recommendation on the promotion of mental health. (1) OJ C 165, 17.6.1994, p. 1. (2) OJ C 390, 15.12.1998, p. 1. (3) OJ L 26, 1.2.1999, p. 1. End of the document


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ANNEX VI

European Parliament Resolution of 17 April 1996 on Alzheimer's disease and the prevention of disorders of the cognitive functions in the elderly

The European Parliament, - having regard to its resolution of 24 February 1994 on measures for the elderly25, - having regard to the motion for a resolution by Mr David W. Martin on Alzheimer's disease (B4-0175/94), - having regard to the motion for a resolution by Mr Fernández-Albor on setting up special centres for investigation and research into the prevention of senile dementia (B4-0502/95), - having regard to the report of the Committee on the Environment, Public Health and Consumer Protection and the opinions of the Committee on Social Affairs and Employment and the Committee on Research, Technological Development and Energy (A4-0051/96), A. whereas the gradual ageing of the population of the European Union and the increase in lifespan are leading to a rise in the incidence of diseases linked to age including Alzheimer's disease and Alzheimer's and related syndromes, B. whereas it is estimated that 8 million people - equivalent to approximately 2% of those in the over-65 age group - will be afflicted with Alzheimer's disease or syndromes by the year 2000, C. whereas Creutzfeldt-Jakob disease is a variety of dementia and thus should form a constituent part of a European programme on Alzheimer's and dementia, D. having regard to the impact which this disease has on the general state of health of European citizens, as well as on our countries' social and health systems, E. having regard to the emotional, physical and financial difficulties faced by the relatives and friends of those affected by senile dementia, F. having regard to the efforts, and the burden involved in providing assistance, of those supporting patients suffering from Alzheimer's disease, their relative isolation and the lack of training and resources available to them, G. having regard to the need to give active support to medical research on the causes, course and consequent possible treatment of Alzheimer's disease and neurodegenerative diseases in general; whereas there are always problems in diagnosing Alzheimer's disease as the symptoms are mistaken for other diseases, H. having regard to the need to coordinate the many existing measures, often the result of private initiatives, and the vital importance of linking them to the existing social and medical systems, with particular reference to the question of providing information, I. having regard to the inadequacy of the Member States' political and financial commitments to take coherent action to combat this disease, J. whereas Alzheimer's disease and related syndromes should be considered as a major health scourge within the meaning of Article 129 of the EC Treaty, 1. Calls on the Commission to submit as soon a possible a programme of measures to combat Alzheimer's disease and related syndromes, focusing on: (a) epidemiological monitoring; (b) early exchange of experience and research into early diagnosis in order to distinguish it from other forms of dementia with specific causes such as multiple heart attack, alcoholism and other syndromes related to Alzheimer's disease, which in some cases are reversible, in which connection every effort should be made to avoid overlapping and duplication of research; (c) drawing up guidelines for the training of staff who in whatever capacity work with Alzheimer's patients (medical and paramedical professions), and for the training of family carers to ensure competent and effective use of the existing resources; (d) support for setting up out-patient clinics and centres specializing in cognitive diseases, consisting of a number of doctors, other staff and experts working in the field of dementia; (e) creation of networks to assess new forms of treatment and support for their development; (f) comparing and exchanging experiences on support measures for families, carers, and patients' associations and non-governmental organizations by promoting the publication and distribution of information pamphlets concerning the training and organization of voluntary workers, legal, psychological and health assistance both at

25 OJ C 77, 14.3.1994, p. 24.


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home and at day centres by promoting or setting up Alzheimer's associations to enable those concerned to exchange experiences; (g) information campaigns for the general public and for specific groups such as schoolchildren, health care professionals and social workers, with due respect for people suffering from dementia and for their dignity; (h) early diagnosis and self-diagnosis; 2. Calls on the Commission to publicize successful initiatives, such as the Alzheimer's telephone lines which are manned 24 hours per day and provide information to those caring for Alzheimer's patients, which exist in several Member States, minding centres to back up home care, and day care and night care and discussion groups for the next-of-kin of Alzheimer's sufferers; calls on the Commission to publicize the Alzheimer Awareness week and World Alzheimer's Day which have already been proclaimed; 3. Calls on the Commission, in the context of its BIOMED research programme, to step up support, by providing more resources, for joint measures relating to research, including basic research, on Alzheimer's disease, including the possible correlation between intake of aluminium from food additives and Alzheimer's disease; 4. Calls on the Commission to step up support for research into Alzheimer's disease and related syndromes, inter alia by carrying out measures and creating special budget headings, for example for the establishment of an appropriate task force; 5. Calls on the Member States (a) to define an appropriate strategy and take measures accordingly, particularly as regards cooperation between social and health services; (b) to draw up a policy providing for the partial or total payment of medical expenses and social charges currently borne by patients' families or carers; (c) to promote the establishment of special training courses for paramedical staff, possibly by introducing para-university courses or short degree courses; (d) to create and support specific hospital and non-hospital infrastructures for those who have reached the terminal phase of the disease; 6. Welcomes and supports Alzheimer EUROPE and other European associations who care for sufferers of Alzheimer's disease and their families; 7. Instructs its President to forward this resolution to the Commission, the Council and the governments of the Member States.


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ANNEX VII

European Parliament Resolution of 11/03/98 on Alzheimer's disease

The European Parliament, - having regard to its resolution of 17 April 1996 on Alzheimer's disease and the prevention of disorders of the cognitive functions in the elderly26, - having regard to the amendment of Article 129 of the EC Treaty on public health, introduced by the Treaty of Amsterdam, which, while failing to strengthen the Union's powers in this field as had been hoped for, nevertheless stipulates that a high level of human health protection must be ensured in the definition and implementation of all Community policies and activities, - having regard to the Commission proposal concerning the Fifth Framework Programme for research and technological development activities (1998-2002) which has included, under the priority issue of the quality of life and management of living resources, a key action relating to population ageing, with the overall goal of promoting healthy ageing and independence in old age, referring specifically to Alzheimer's disease, A. whereas the gradual ageing of the population of the European Union and the increase in lifespan are leading to a rise in the incidence of diseases linked to age, including Alzheimer's disease and related syndromes, B. whereas some five million families in all the Member States are afflicted with indescribable and ongoing emotional, psychological and financial difficulties, C. whereas the large number of projects submitted to the Commission each year by associations representing the patients and their families in Europe, in the context of the promotion of actions to combat Alzheimer's disease, demonstrates that this scourge has become a genuine socio-economic problem in all the Member States, 1. Deplores the fact that neither the Commission nor the Member States have yet responded adequately to its requests to step up efforts to combat this fast-growing disease; 2. Regrets in particular that the Commission has still not launched an action programme to combat Alzheimer"s disease and other neurodegenerative disorders which would both provide an impetus for European research and coordinate measures taken in the Member States; 3. Urges the Commission again to submit, as part of the future communication on public health, a specific programme of action against Alzheimer's disease and related syndromes, as called for in its aforementioned resolution of 17 April 1996; 4. Emphasizes, considering the ageing of the population and the ensuing increase in the number of Alzheimer patients, the importance of research in this area, and highlights in this connection the key action in the Fifth Framework Programme for Research & Technological Development; 5. Reminds the Commission that provision has been made for Community financial support to implement action programmes in respect of other diseases, such as those related to pollution, rare diseases and diseases caused by injuries, and therefore calls for similar criteria to be adopted in respect of Alzheimer's disease; 6. Calls for the Commission to conduct a survey on the social and financial consequences of Alzheimer's disease in the European Union and to notify the European Parliament of its findings at the same time as it submits the aforementioned action programme; 7. Instructs its President to forward this resolution to the Commission, the Council and the governments of the Member States.

26 OJ C 77, 14.3.1994, p. 24.

Health & Medicine

Health, ageing and public policies in European Union