Joint Programming of research to combat neurodegenerative diseases, in particular Alzheimer's disease (debate) 
President
The next item is the debate on the oral question to the Council on
joint programming of research to combat neurodegenerative diseases, in particular Alzheimer's disease - B7-0218/2009)
The author, Herbert Reul, has indicated that he is running late. If he arrives, he may be given the floor at the end.
Françoise Grossetête
Mr President, in the absence of Mr Reul, I will repeat this question that we are putting to the Commission. In accordance with the legal basis of Article 165 of the treaty, the Council Recommendation on measures to combat neurodegenerative diseases calls for Parliament to be consulted.
We want to know whether the Council can confirm its intention to adopt conclusions on this issue during the Competitiveness Council of 3 December 2009. Moreover, since Parliament was consulted on the Commission's proposal, is the Council prepared to take Parliament's views into account when drafting its conclusions?
Next, regarding possible future joint programming of research activities, can the Council confirm its opinion that these initiatives should, in principle, be adopted using the same legal basis?
I should like to point out that we have drafted a resolution. This resolution has the support of all the political groups and it is important because, quite simply, it highlights the challenges of an ageing population - these challenges that mean that, today, in Europe, we have more than seven million people suffering from Alzheimer's disease, a figure that it is estimated will double over the next 20 years.
It is therefore crucial to plan, invest and cooperate in this area in order to control the social costs of these diseases, and to offer hope, dignity and a healthier life to the millions of sufferers and their families. These health and social problems, which affect the whole of Europe, require coordinated measures designed to ensure the effectiveness of the prevention, diagnoses, treatment and care provided to the people concerned.
Special attention must be paid to support for the research and innovation work carried out by public and private operators in an effort to find new cures and to prevent the development of these diseases. Health research is even more fragmented at European level, and the number of public-private partnerships must be increased. The example of the Innovative Medicines initiative, launched in February 2008, must not remain a one-off experiment.
I shall conclude by saying that this really is a race against the clock, for we must forestall these diseases as much as possible. Research today shows that there are already initiatives aimed at pre-diagnosis. It is on these concrete issues that our fellow citizens are expecting signals from the Europe for health, which must give guarantees and anticipate the development of age-related diseases.
Cecilia Malmström
Mr President, the proposal for a Council Recommendation on measures to combat neurodegenerative diseases, in particular Alzheimer's, which was adopted by the Commission on 22 July, is based on Article 165 of the treaty. This article talks about coordination of research and technological development activities between the Community and the Member States, precisely to ensure greater consistency between national policies and Community policy.
Article 165 accords with the objectives for joint programming initiatives. These objectives are based on the idea that we jointly establish the challenges that our societies are collectively facing and that, through increased political commitment on the part of the Member States, we can agree on joint or coordinated responses to these challenges. The aim, of course, is to increase efficiency in the public financing of research in Europe.
However, I believe that the problem and the key to your question is that Article 165 does not give the Council the right to act. This article constitutes a legal basis for the Commission to take possible initiatives to promote coordination between the Member States and the Community's policy. There is no other legal basis in the treaty under the heading of research that the Commission could use to propose measures relating to joint programming initiatives.
There is, of course, a very strong political commitment within the Council for introducing pilot initiatives for joint programming aimed at combating Alzheimer's, in particular, as soon as possible. In the light of this, it is the Presidency's view that the Council should adopt conclusions on this joint programming initiative on the basis of the text that has been tabled by the Commission.
I know that the European Parliament gives high priority to the fight against Alzheimer's disease. In a declaration issued in February, Parliament called on the Commission and the Member States to recognise this fight as a European public health priority. You are, of course, familiar with the Commission's proposal. The Presidency will try to ensure that Parliament's views are, as far as possible, incorporated into the conclusions that are to be adopted when the Competitiveness Council meets on 3 December this year.
As regards possible future joint programming initiatives, the Council shares the Member's view that a common approach should be chosen to adopt these initiatives under the research heading. Unfortunately, there is currently only one method available and that is to adopt Council conclusions for each separate initiative. This is because the treaty contains no appropriate legal basis for adopting other measures.
Elena Oana Antonescu
The Swedish Presidency wishes to adopt in December the conclusions regarding the measures to combat neurodegenerative diseases without even waiting for Parliament's view on this issue.
I was rapporteur for the opinion of the Committee on the Environment, Public Health and Food Safety on this dossier and, given these circumstances, I support the adoption of a resolution to express Parliament's position on the measures to combat neurodegenerative diseases, especially Alzheimer's disease, through joint programming of research activities.
Neurodegenerative diseases pose a major health problem in Europe. Advances in medical science and the standard of living in developed countries have created conditions resulting in an increase in life expectancy, but the number of people affected by neurodegenerative disease has also risen.
This is a problem which has a number of different aspects to it. Some aspects relate to the quality of life of those affected by these diseases, the impact which the disease has on their close family or on those who care for them. It is equally a problem affecting the sustainability of the health care systems which will have to cope with an increased number of patients, at a time when, as a result of the ageing population, the proportion of people no longer working is on the rise.
The Commission's proposal focuses on the research-related aspects. The resolution which we are proposing equally emphasises the results which will be achieved through coordinating research activities and the extent to which they will help improve the current situation. Therefore, I urge our efforts to be focused in two main areas: scientific research and ensuring that the efforts made are reflected in the results achieved in terms of the quality of care which patients can enjoy.
Bearing in mind the interest which Parliament has shown over time in this area and the importance of this dossier, which is a pilot project for the joint programming of research activities, it is vital that Parliament's position is taken into account when drafting the Council's conclusions.
Parliament must be involved in all initiatives relating to future joint programming in the field of research. In fact, Article 182 of the Treaty of Lisbon ensures a suitable legal basis for future developments in this area.
Patrizia Toia
Mr President, ladies and gentlemen, the initiative that we are about to launch is very important for two reasons: the first is the subject of the research, which concerns the fight against neurodegenerative diseases, and the second is the joint programming methods for the research.
Clearly, we would have preferred Parliament to have been more directly involved in the pilot project - this has been said and it is the subject of our question. While we must press on now and not bring matters to a halt, we are nonetheless asking for guarantees that our opinion will be taken into account in the Competitiveness Council's deliberations, and that a more certain legal basis will be defined in future so that Parliament can be fully involved and there can be a greater sense of ownership in this field of research.
We must now intervene with adequate means and resources to prevent and eradicate the widespread scourge of Alzheimer's disease, Parkinson's disease and the other diseases, which are destined to become more common as our population ages. We call for efforts to be focused on extensive, large-scale studies, aimed both at diagnosis and at identifying cures. Research into biomarkers, into early diagnosis methods based on a multidisciplinary approach, the compilation of vast databases, and the search for curative medicines and appropriate treatment and service models would appear crucial.
I wish to make just one request in this House: that we ignore neither the individual circumstances of patients, which are too often excluded in the context of these types of disease, nor the involvement of patients' and relatives' associations. From a methodological point of view, we believe that joint research projects are very important because they fulfil an essential requirement: that of pooling efforts and resources and overcoming these divisions, these duplications, and therefore being able to create a critical mass that is sufficient to produce satisfactory results from this type of research.
If we consider that, in other parts of the world, joint public and private efforts manage to invest tens of millions of euros, we realise how much there remains for us to do and how much we still have to do, by directing our efforts towards joint projects, towards strategic lines of action and joint programmes between the Member States and Europe and towards common programmes between public and private operators, without disregarding that international framework that puts us in contact with major scientific developments at international level.
Jorgo Chatzimarkakis
Mr President, Madam President-in-Office of the Council, today we are debating a motion for resolution on neurodegenerative diseases. The intention is actually for this to become a directive, and so next time, we should also be debating a directive on this subject. The diseases that we are discussing today - Alzheimer's disease, although Parkinson's disease is also referred to in the text - are diseases of the brain which constitute a major challenge for Europe. The long-term costs are set to soar and there is still a lot of research to do. Unfortunately, there is a lot of duplicated research and bureaucracy in Europe. Thus, with this motion for a resolution, we want to eliminate the duplicated research, bureaucracy and fragmentation.
The Group of the United European Left - Nordic Green Left has tabled a motion for the research results to be made publicly available. I think this motion is a good one. Unfortunately, the wording is wrong, and I would therefore ask for it to be reworded so that it can be incorporated better. Essentially, there is a problem with regard to European patents. It would be good if the Commission, and the Council, too, could take up the subject of European patents in the areas of pharmaceuticals and bio-research and make it clear that we need this. In any case, the Group of the Alliance of Liberals and Democrats for Europe supports this motion for a resolution.
Philippe Lamberts
on behalf of the Verts/ALE Group. - Mr President, I should have been rapporteur on this dossier, so I feel a bit disappointed. However, I am happy that we are moving forward. It is not the time for an interinstitutional dispute. I am happy that the Council is prepared to move.
I have a number of observations to make. Indeed, we hope here in Parliament that the Council will take on board the ideas in the resolutions that we are going to vote on tomorrow.
I would emphasise the need to have the right balance between - like in climate change - mitigation and adaptation. Here, I am speaking about preventing this disease and understanding why it happens, what the factors are, so we can really prevent it effectively, because that is always the most effective and also the least expensive way of fighting disease.
Is the joint programming initiative enough? Well, not in the sense that this should become the norm, that in such major undertakings, working together should be the norm, not just a voluntary thing, but something that would really bind all Member States into working together effectively.
Secondly, on financial priorities, the first question is: are we spending enough on these types of diseases? We believe this is not the case and we would strongly encourage, within the forthcoming framework programmes, taking some money from big programmes like ITER, which the best scientists are telling us will pay off maybe in 60 years, and put some of that money into research into Alzheimer's disease and other diseases of a similar nature. I think that this is really needed.
Marisa Matias
First of all, I would like to express my complete support with regard to the question that was asked by Mr Reul and, in particular, to point out that the fundamental issue - the fundamental political issue here - is precisely a matter of joint programming of research.
What happened on the issue of joint programming on neurodegenerative diseases and, in particular, Alzheimer's disease, was that the rules changed in the middle of the process. We went from having a report to having a resolution, thereby taking away our codecision powers on this issue. We stopped being MEPs and instead became advisers. I would therefore like to know, at least, whether what we recommend will be taken into account or not.
Programming research activities, in any area, is a political choice and not a technical choice and, in this regard, Parliament's role should be emphasised and strengthened. In my view, defining priorities that are political means that they should be scrutinised, should be transparent and should be democratic. What happened in relation to the joint decision and joint programming of research on Alzheimer's disease is a process that should not be repeated. Should it ever be repeated, please at least give us plenty of warning. I therefore hope that the last thing that can happen is that the decisions and the recommendations tabled by Parliament on this issue are not taken into consideration.
Diane Dodds
Madam President, in my constituency of Northern Ireland, we currently have 16 000 people suffering from dementia. They, their families and their carers will welcome a proactive approach to tackling this disease, which can be so devastating to both sufferers and families.
It is in areas like this that I believe it is good to see cooperation across European states. I believe that a coordinated approach to tackling disease can bring forward new evidence, new medical breakthroughs and, in time, hopefully improve treatment and cure.
In the United Kingdom, we currently have just over 400 000 people suffering from Alzheimer's. This United Kingdom figure is likely to be something in the region of 750 000 people by 2025. It is therefore imperative that something is done to improve our diagnosis, treatment and prevention and social research into the welfare of patients and their families, particularly families who act as carers. A coordinated approach and a sharing of research are vital, as long as that research respects the sanctity of human life in all its forms.
Maria Da Graça Carvalho
(PT) I welcome the initiatives and the actions undertaken at European level to combat neurodegenerative diseases and, in particular, Alzheimer's disease. The Member States have been developing research efforts in this field. It is important that cooperation among Member States is encouraged, to ensure increased coordination in terms of scientific research and technological development, and avoid fragmentation.
Joint programming of research is a valuable tool for reducing fragmentation by involving, at European level, the Member States, the public sector and the private sector. This joint programming tool will be vital for the future of the European Research Area. Developing the European Research Area lies at the heart of the research policy of the Treaty of Lisbon.
However, I am concerned about the implementation of this joint programming tool in terms of bureaucratic complexity and delays in administrative procedures. I would therefore like to ask what the plans are for using a process based on economy of scale, combining efficiency, simplification and fast-tracking of administrative procedures so as to promote excellence and to encourage collaboration at European level, as called for by the importance of this issue.
Nessa Childers
Madam President, as a former health care professional of over 30 years, it was distressing to learn that Parliament would not be consulted regarding the Commission's new proposals on Alzheimer's disease. However, we must move on.
As Europe's population becomes older, the impact of Alzheimer's will become deeper too. The number of Alzheimer's cases worldwide is predicted to grow from 35 million today to 107 million cases in 2050.
One of the most harrowing aspects of Alzheimer's disease is the many people it affects apart from the patient. In Ireland, for example, there are 50 000 listed carers to cater for Ireland's 44 000 sufferers. This disease is often called a family disease because of the chronic stress of watching a loved one slowly decline.
The further role of the European Parliament in the fight against Alzheimer's disease should not be discounted. Any new direction by the EU should take account of Parliament's unique voice on the matter and should move to assist not just Alzheimer's sufferers but also the many carers who work to increase their quality of life.
Mairead McGuinness
Madam President, obviously, coordinating research in this area is really important, and this is not just about Alzheimer's disease, as the term 'neurodegenerative' covers a multitude of diseases.
Parliament actually has a very significant role to play in how that research will be done. I draw attention to the ongoing discussions between Parliament and the Council on the issue of the welfare of animals used in scientific experimentation. I am concerned - and hopeful, because of our rapporteur and the direction of the talks - that we continue to allow necessary research using animals in a way that is more welfare friendly than perhaps it is now. This is because we need research in this area in order to do the things that have been spoken about to prevent, and to treat people - and we may be amongst them ourselves in time - who unfortunately may be affected by these diseases.
I hope we can have an early agreement at second reading on this very important directive. While we may not have had a great input into this particular issue, we will have had one into the ongoing research.
Bogusław Sonik
(PL) Madam President, the question of the battle against this disease was raised - and credit should be given for this - during the French Presidency. It was said then that the EU should take action in this matter. It would be good if the next Presidency took up this matter and treated it with equal importance. It has already been said here that this problem affects millions of people and their families, who are all suffering.
When we meet our constituents, we often hear this question: what does the EU do for the citizens of Europe? What are you there for? What are you responsible for? What do you do? It is just this type of question which should be the subject of efforts to build an image of authority and importance for the European Union. This is what our citizens need. Joint efforts to combat diseases of this kind must be a priority for the EU institutions.
Nikolaos Chountis
(EL) Madam President, I take the problem of combating neurodegenerative diseases - and especially Alzheimer's - extremely seriously.
It is therefore very useful to have and achieve coordinated action between the Member States of the European Union in combating the causes and in addressing the problem of prevention and treatment and the consequences which such diseases have on patients, on society as a whole and on the public health of the citizens of the European Union.
I believe that the priority and main approach should be in the field of prevention and not in the field of medication. The Member States should also be encouraged to set up monitoring centres for patients and their carers and to secure equal scientific participation by the Member States in this research endeavour by the European Union.
Finally, the database created in agreement with the Council and the Member States must be under public and state ownership within the framework of national systems and the conclusions must be publicised at a public world forum. Finally, it is up to us to control the budget for this issue.
Vilija Blinkevičiūt
(LT) Certainly, I agree that at this time, it is particularly important to devote attention to scientific research to ensure help for people suffering from Alzheimer's, as our European Union unites 27 Member States and not all states are equally able to offer assistance to Alzheimer sufferers. There are different health care systems, different social service systems, different support for those families with such a patient. Therefore, this scientific research is vitally important and we must concentrate and find, first of all, funding, coordinated work and coordinated activities. Secondly, it is very important that there is funding to implement that research and offer real support to people suffering from that disease, as well as their families.
Herbert Reul
(DE) Madam President, I will be very brief. The importance of this has already been stated by several speakers. It is a disease that affects many people and that number is growing. It is even more essential for the Member States to work together, to combine forces, in order to be effective. As far as this goes, this is a right and sensible path to take.
It is a shame that, when it comes to the procedures, we have difficulty getting Parliament involved. It is regrettable that this resolution had to be prepared at the last minute. However, if a good result is achieved in the end, then that is what is important.
Cecilia Malmström
Madam President, Alzheimer's and other dementia-related diseases are dreadful. I believe that many of us who have seen a relative affected by Alzheimer's know how it can destroy a previously healthy person and how painful it is for family and other relatives, and I feel very strongly that we need to invest more resources in researching this terrible disease.
It is clear that we need to take new steps to better coordinate our knowledge and research in Europe, and the Commission's pilot initiative aims to mobilise the best researchers we have to attempt to understand, cure and prevent both Alzheimer's and other dementia-related diseases.
Within the framework of the current troika between France, the Czech Republic and now Sweden, we discussed at an early stage the importance of including Alzheimer's as a joint priority issue in the context of the work relating to public health. The French Presidency held a very important conference, as one of the honourable Members mentioned, and the Swedish Presidency held a conference in September on dignified ageing, with Alzheimer's as one of the items on the agenda.
As I said, the Council intends to adopt conclusions on this on 3 December, and we will, of course, take into account the excellent resolution that you have produced and that you will vote on tomorrow. I am certain that the issue of Alzheimer's will come up again within the framework of the research programme and similar initiatives in the very near future, so thank you very much for raising this very important issue.
President
A motion for a resolution to wind up the debate has been tabled under Rule 115(5) of the Rules of Procedure.
The debate is closed.
The vote will take place tomorrow.
Written statements (Rule 149)
Cristian Silviu Buşoi  
I welcome the proposal for a recommendation of the Commission on joint programming of research in the area of neurodegenerative diseases. The population's mental health is a vital issue for ensuring a decent quality of life. Diseases of this type are affecting an ever-increasing number of people in the EU. This is why efforts are required to combat the factors responsible for triggering these diseases. However, in order to combat these factors, they need to be identified through research. I believe that the pilot project for joint programming of research activities offers a definite advantage in terms of pooling the efforts for funding research, which will result in a more efficient use of the funds earmarked for research in this area. Furthermore, cooperation based on networks created by national research centres and the joint use of the required infrastructure are all the more beneficial, given that not all Member States have the necessary resources to undertake research activities at their own expense, even though they are facing a high number of cases involving neurodegenerative diseases. It will be paramount for the research results to be used to inform the population about the ways of supporting mental health, thereby helping reduce the number of patients and maintain the viability of national public health care systems.
António Fernando Correia De Campos  
Madam President, ladies and gentlemen, the Commission's communication to Parliament offers an optimistic analysis of the expected benefits of cooperation in research among Member States and of the coordination that the Commission can carry out, in the context of the Seventh Framework Programme, with regard to neurodegenerative diseases, and Alzheimer's disease in particular. The measures proposed in the communication only concern the principle of making better use of existing resources and programmes: the 'Health' Programme, the Seventh Framework Programme, the EU Action Plan on disabilities, the open method of coordination and the Statistical Programme. Will optimising our use of these resources be enough to achieve the expected results? What coordination mechanisms is the Commission proposing that could not have been implemented before the communication? What added value does it provide? What new, practical measures is the Commission thinking of adopting to stimulate cooperation in research, in a situation where resources and teams already exist, although they are fragmented? Will giving greater visibility to the issue and using existing instruments be enough to resolve it?
Proinsias De Rossa  
in writing. - I support this Resolution welcoming the proposed pilot project for joint programming of research activities in the field of neurodegenerative diseases. Neurodegenerative diseases such as Alzheimer's and Parkinson's disease affect more than seven million citizens of the European Union. No cures are currently available for neurodegenerative diseases and knowledge about prevention, treatment, and identification of risk factors is very limited. Indeed, most of the research effort in the field of neurodegenerative diseases is carried out by Member States, with a relatively low level of transnational coordination, leading to fragmentation and limited sharing of knowledge and best practices among Member States. Joint programming could be highly valuable in reducing fragmentation of the research effort, leading as it would to a pooling of a critical mass of skills, knowledge and financial resources. However, Article 182(5) of the Treaty on the Functioning of the European Union, as inserted by the Treaty of Lisbon, which establishes measures necessary for the implementation of the European research area, could provide a more appropriate legal basis for future joint programming initiatives in the field of research. The Commission should consider using Article 182(5) as a legal basis for all future proposals for joint programming of research activities.
Eija-Riitta Korhola  
Madam President, Alzheimer's disease is a confusing illness that changes the sufferer's world into somewhere unknown and perilous. Life becomes a highly dangerous 'now', where there are no past memories and lessons learnt to build a bridge of security to the present moment. Moreover, this fateful human tragedy is made all the worse by the fact that there is no known cure for the disease at this time. The illness also involves the suffering of close relatives. It is sometimes called a family illness, with relatives often suffering from chronic stress. The social impact is enormous and takes a heavy toll. As the population ages in Europe, neurodegenerative diseases, such as Alzheimer's and Parkinson's, are becoming more and more a public health issue: there are now more than seven million patients, and that number is expected to double in the next decade. Medical science, however, still does not even fully understand the causes of the disease. There are some promising findings from research, but we need coordinated efforts if we are to achieve a breakthrough. In order to compile the data from the research of private and public organisations and the Member States and coordinate their innovations, we need Community programming: that way, there is hope that more effective prevention, diagnoses and treatment with regard to these diseases will become a reality as soon as possible in practical care work. I am convinced that the people who are struggling with neurodegenerative diseases - the patients, relatives and carers - will vigorously support any collaborative attempts to look for new ways to deal with these conditions. It is just these sorts of projects that tell our citizens why we are here today at all: they justify the Union's entire existence. I agree with my colleague, Mr Reul, that procedure and competence take second place when one is actually headed in the right direction.
Sirpa Pietikäinen  
Madam President, ladies and gentlemen, in the summer, the Commission adopted the Council's recommendation urging the Member States of the EU to engage in joint programming of research into neurodegenerative diseases. This is important if even better use is to be made of the limited resources for research. We need to remember, however, that, in addition to research, Europe needs a more extensive action programme on dementia. Earlier this year, the European Parliament approved a written statement calling on the Commission to draft an action plan on Alzheimer's disease. Parliament's statement emphasised the importance of four issues: developments in research, early diagnosis, improved quality of life for patients and their carers, and the status of the Alzheimer's associations. I would like to remind everyone that the programme is urgent and the Commission needs to get started on the action that Parliament has asked it to take.
Richard Seeber  
In our increasingly elderly society, the number of neurodegenerative diseases like Alzheimer's or senile dementia will continue to increase. In order to be as prepared for this as possible, we need to create better research structures and make better use of the existing facilities. The planned pilot project in this area is an ideal starting point for interlinking the current research efforts better. However, prevention is also important alongside providing the best possible care for those affected. The Member States need to step up their information campaigns regarding an active lifestyle.
