Activities of Philippe JUVIN related to 2010/2084(INI)
Plenary speeches (1)
European initiative on Alzheimer’s disease and other dementias - Asthma inhalers (debate)
Amendments (35)
Amendment 3 #
Motion for a resolution
Citation 4
Citation 4
– having regard to the World Alzheimer Report 20109 released by Alzheimer’s Disease International (ADI) in the context of World Alzheimer’s Day on 21 September 20109,
Amendment 9 #
Motion for a resolution
Recital A
Recital A
A. whereas it is estimated that 35.6 million people worldwide will be living with dementiasuffering from dementia in all its forms in 2010 – and thatwhereas this number is estimated to nearly double every 20 years, topossibly reaching 65.7 million in 2030 (2010 report by Alzheimer's Disease International),
Amendment 15 #
Motion for a resolution
Recital B
Recital B
B. whereas the number of people suffering from neurodegmenerative diseasestia in Europe is estimated to be 8.69.9 million, with (2010 report by Alzheimer’'s accounting for the vast majority of those casesDisease International); whereas neurodegenerative diseases represent one of the main causes of disability in the elderly, and whereas the number of people suffering from these diseases is expected to rise dramatically by 2020, owing to increased life expectancy and a decreasing ratio of working to retired populations,
Amendment 30 #
Motion for a resolution
Recital D
Recital D
D. whereas the total direct and informal care costs ofaccording to certain estimates (2010 report by Alzheimer’'s dDisease and other dementias in 2005 amounted to EUR 130 billion for the EU 27 region, or approximately EUR 21 000 per year per person affected by dementia (56% of the costs being generated by informal care2)International) the total direct medical and social care costs of Alzheimer's disease in Europe amount to USD 135.04 billion,
Amendment 33 #
Motion for a resolution
Recital D – footnote 2
Recital D – footnote 2
Amendment 34 #
Motion for a resolution
Recital D a (new)
Recital D a (new)
Da. whereas the European Union does not currently have at its disposal sufficiently precise statistics concerning neurodegenerative diseases, and whereas the estimates vary by up to a factor of three, depending on the study consulted; whereas it is essential, therefore, that European epidemiological studies should be carried out on the basis of common, strictly defined indicators,
Amendment 37 #
Motion for a resolution
Recital E
Recital E
E. whereas the bulk of the research effort in this field ishas been carried out by Member States,; with a relatively low level of transnational coordination, leading to fragmentation and limited sharinghereas, however, two recent European initiatives, the ALCOVE joint action in the area of health and the joint programming in the area of research, Joint Programming on Neurodegenerative Disease, should make it possible to reduce fragmentation of knowledge and best practice among Member States,
Amendment 44 #
Motion for a resolution
Recital F
Recital F
F. whereas there is a growing awareness that the impact of neurodegenerative diseases on the population in Europe is of such a magnitude that no Member State is capable of resolving it alone; whereas it is therefore necessary in the EU to significantly strengthen cooperation and coordination of innovative and multidisciplinary clinical research efforts and the level of financial investment in this area, in order to combat neurodegenerative diseases, particularly Alzheimer’s, which is a major challenge for European societies,
Amendment 48 #
Motion for a resolution
Recital G
Recital G
G. whereas dementia is not only a devastating disorder for the patients themselves, but also a very heavy burden placed on the shoulders of the patients’ relatives, givethe role of carers, whether family members or relatives, is vital in assisting persons suffering from Alzheimer's disease and other forms of dementia; whereas, in the light of the fragmented and complex nature of the care and assistance arrangements, on the one hand, and of the gulf between the needs of dementia sufferers and carers and the nature of the vocational training provided in the Memotional, physical and financial difficulties faced by the relatives and friends of those affected by all types of dementiaber States, on the other, the task of looking after dementia sufferers results in an increased domestic workload, a deterioration in their state of health and psychological distress for carers, whether family members or relatives,
Amendment 55 #
Motion for a resolution
Recital G b (new)
Recital G b (new)
Gb. whereas, in connection with the care of dementia sufferers and support for carers, the European Union and the Member States must pursue a threefold objective: provide high-quality care for sufferers, ensure that carers can take advantage of periods of respite tailored to their needs, and ensure that sufferers can be looked after at home or in high-quality, innovative care facilities,
Amendment 63 #
Motion for a resolution
Recital H
Recital H
H. whereas, although social awareness and scientific knowledge of Alzheimer’s disease have increased dramasubstantically in the past 20 years, therapeutic options are still limited to symptomatic drugs, and diagnosis is still largely based on individual physician experience and subjective judgementwhereas there are currently striking disparities between and even within Member States and shortcomings in terms of the training and qualifications of staff and the availability of equipment needed for diagnosis and research,
Amendment 68 #
Motion for a resolution
Recital H c (new)
Recital H c (new)
Hc. whereas Alzheimer's disease and the other forms of dementia do not only affect the elderly, but may also be developed by young people; whereas access to diagnostic services, research and care, support and accommodation should be improved for young sufferers,
Amendment 69 #
Motion for a resolution
Recital H d (new)
Recital H d (new)
Amendment 74 #
Motion for a resolution
Paragraph 1
Paragraph 1
1. Calls on the Council to declare dementia an EU health priority, and urges the Member States to develop national strategies to provide services and support for people with dementia and their families, as has been done in several Member States, including France, where the 'Alzheimer's and similar diseases' plan launched in 2008 has made it possible to coordinate medical and social care and clinical and basic research into these diseases at national level;
Amendment 83 #
Motion for a resolution
Paragraph 2
Paragraph 2
2. Suggests that the Council and the Commission consider launching a European Year of the Brain in order to raise awareness of brain-related diseases associated with ageing, and measures to prevent themprevention and information campaigns about the treatment of cerebral vascular accidents;
Amendment 94 #
Motion for a resolution
Paragraph 3
Paragraph 3
3. Underlines the relevance of early diagnosis for preventive interventions, and the need for epidemiological data to help direct research and acand the collection of epidemiological data for new research and primary and secondary preventive interventions;
Amendment 98 #
Motion for a resolution
Paragraph 3 b (new)
Paragraph 3 b (new)
3b. Is convinced that the early diagnosis tests recently proposed by the International Working Group on the New Criteria for Alzheimer's Disease, research into risk factors and the definition of early-diagnosis criteria are vitally important;
Amendment 99 #
Motion for a resolution
Paragraph 4
Paragraph 4
4. Encourages all the Member States to engage actively in the definition, and development and implementation of common protocols for early diagnosis and a common research agenda in the field of neurodegenerative diseases and the sharing of best practices in the area of research into neurodegenerative diseases, thus reducing the prevailing inequalities between Member States and within Member States as regards diagnosis and treatment; emphasises that standard operational procedures for the assessment of disease markers will be key to drug discovery and to the development of more effective, technology-assisted care of patients with Alzheimer’s disease;
Amendment 103 #
Motion for a resolution
Paragraph 4 c (new)
Paragraph 4 c (new)
4c. Encourages the Commission to draw up guidelines for the development and implementation of common early diagnostic services based on a multidisciplinary assessment of the patient’s state of memory and an adapted notification and information system to provide patients and their families with the best possible framework in which to approach the onset of the disease;
Amendment 104 #
Motion for a resolution
Paragraph 4 d(new)
Paragraph 4 d(new)
4d. Points out that standard operational procedures for the assessment of disease markers will be key to drug discovery and to the development of more effective, new- technologies-based care of patients with Alzheimer’s disease;
Amendment 105 #
Motion for a resolution
Paragraph 4 e (new)
Paragraph 4 e (new)
4e. Encourages the Member States to establish specialist centres and to provide satisfactory medical equipment (including magnetic resonance imaging, whose contribution to dementia research is indisputable) nationwide;
Amendment 109 #
Motion for a resolution
Paragraph 5
Paragraph 5
5. Points to the importance of a multidisciplinary approach on ways in which cooperation and coordination in the field of research at European level can improve knowledge, diagnosis, treatment, prevention, and social researchCalls on the Commission to draw up guidelines for coordination, cooperation between Member States and research centres, and the development of a European approach and network for innovative and multidisciplinary research. Studies will concern the development of new approaches, particularly into the welfare of patients and their families and carers; believes that early diagnostic tests, research into risk factors and criteria for early diagnosis are crucial; this being the case, sees clear added value infield of drug therapies, non-drug therapies and vaccine therapies and on the quality of care and quality of life of patients and carers. Establishing and studying monitoring cohorts and conducting large- scale epidemiological and clinical studies in transnational collaboration; will clearly bring European added value to our understanding of the mechanisms of Alzheimer’s disease;
Amendment 120 #
Motion for a resolution
Paragraph 6
Paragraph 6
6. Invites the Member States to develop a Strategic Research Agendaction Plan establishing medium- to long-term research needs and objectives in the area of neurodegenerative diseases, especially Alzheimer’s; takes the view that the strategic research agenda should be further developed towards an implementation plan establishing priorities and timetables and specifying the actions, instruments and resources required for its implementation. These action plans should focus on enhancing the potential of young researchers and supporting innovative research approaches based on a public- private partnership;
Amendment 126 #
Motion for a resolution
Paragraph 7
Paragraph 7
Amendment 138 #
Motion for a resolution
Paragraph 8
Paragraph 8
8. Calls on the Commission to draw up guidelines for the training of staff who work in whatever capacitycreation, professionalisation, enhancement and specialisation of jobs in the treatment, care and support of people with Alzheimer’s patients (medical and, paramedical and social professions), and for the training of family carers to ensure competent and effective use of the existing resourcesand monitoring of carers, particularly in care, non-verbal communication and stress management techniques and in maintaining the relationship with a sick relative;
Amendment 149 #
Motion for a resolution
Paragraph 9
Paragraph 9
9. Underlines that the recent advances in imaging and biomarker research have indicated that Alzheimer’s disease develops as a result of the deposition in the brain of are opening up new areas of investigation into the causes of, and mechanisms at work, in Alzheimer’s disease, and tend to suggest that certain types of proteins (amyloid beta,) a small neurotoxic proteinre linked to the appearance and development of this disease;
Amendment 152 #
Motion for a resolution
Paragraph 10
Paragraph 10
Amendment 163 #
Motion for a resolution
Paragraph 11
Paragraph 11
11. Encourages Member States to develop services with the core principle of maximising coverage and ensuring equity of access, to benefit people with dementia regardless of age, gender, ethnicity, wealth, disability, and rural or urban residence;
Amendment 168 #
Motion for a resolution
Paragraph 11 d (new)
Paragraph 11 d (new)
11d. Encourages the Member States to develop personalised pathways for multiprofessional and multidisciplinary care and support coordinated by a single reference person from the moment the diagnosis is notified in order to facilitate home-based care through increased use of multi-purpose and specialised home help and care services, home automation and new information and communication technologies;
Amendment 169 #
Motion for a resolution
Paragraph 11 e (new)
Paragraph 11 e (new)
11e. Calls on the Member States to develop diverse, innovative and high- quality facilities to offer respite to carers, such as accommodation and temporary reception centres, and to monitor the health of carers by, for example, providing them with appropriate medical care and psychological or social support;
Amendment 170 #
Motion for a resolution
Paragraph 11 f (new)
Paragraph 11 f (new)
11f. Calls on the European Union and the Member States to strengthen research, improve access to diagnostic services and adapt care and support services to the needs of young sufferers;
Amendment 171 #
Motion for a resolution
Paragraph 11 g (new)
Paragraph 11 g (new)
11g. Encourages the Member States to provide patients with access to new treatments whose therapeutic effectiveness has been verified and established, and to do so as soon as possible after they become available;
Amendment 172 #
Motion for a resolution
Paragraph 11 h (new)
Paragraph 11 h (new)
11h. Calls on the Commission and the Member States to consider the possibility of establishing a specific financing instrument for facilitating patient access to new treatments;
Amendment 176 #
Motion for a resolution
Paragraph 12
Paragraph 12
12. Encourages the Commission and the Member States to develop information campaigns for the general public and for specific groups such as schoolchildren, health care professionals and social workers, comparing and exchanging experiences on support measures for family carers, patients’ associations and non-governmental organisations by promoting the publication and distribution of information pamphlets concerning the training and organisation of voluntary workers and legal, psychological and healthpublic awareness campaigns to highlight the situation of sufferers and their families and to provide information about the training and organisation of people working with sufferers, the various protocols and all the research currently being undertaken at regional, national and European levels, about care and home-based support, about the existing respite measures (access to this information could be facilitated by setting up as sistants both at home and at day centresngle national telephone number and a website), and by promoting or setting up Alzheimer’s associations to enable those concerned to exchange experiences;
Amendment 182 #
Motion for a resolution
Paragraph 12 d (new)
Paragraph 12 d (new)
12d. Encourages the Member States and the Commission to promote a consideration of the needs of and an ethical approach to sufferers in order to guarantee respect for human dignity, and to consider the legal status of people suffering from neurodegenerative diseases with a view to providing a legal framework for the deprivation of liberty and legal protection for sufferers;