Multiple sclerosis (debate)
The next item is the debate on the oral question by Marcin Libicki, on behalf of the Committee on Petitions, to the Commission, on the Multiple Sclerosis Code of Best Practice - B6-0124/2007).
author. - (PL) Madam President, the European Parliament has dealt with health issues on a number of occasions. However, the view is often expressed that Parliament should focus on general health issues, such as medical treatment, insurance and appropriate care for those both ill and healthy. People sometimes say that it should not concern itself with specific diseases. However, I think that the disease being discussed today, namely multiple sclerosis, is a problem on such a dramatic scale that Parliament's involvement is justified. Neither is it the first time that the European Parliament is taking action in this field.
A few weeks ago, on 29 May of this year, a conference was organised in Brussels by the European MS Platform. This conference was held under the auspices of the President of the European Parliament, Mr Hans-Gert Pöttering, for which we thank him, and was organised by Mrs Uma Aaltonen. I would like to remind you that Mrs Uma Aaltonen was once one of our colleagues. She was a Member of the European Parliament and a member of the Committee on Petitions, of which I am the chairman. Mrs Uma Aaltonen suffers from multiple sclerosis herself. She is a writer, a journalist and a teacher, and particularly supports this cause.
I would like to remind you that the Committee on Petitions dealt with the issue of multiple sclerosis in petition 842/2001. As a result of this petition, the Committee on Petitions produced a report which was discussed in Parliament during the December plenary session in 2003. Thanks to our cooperation with multiple sclerosis associations in all the Member States and the European Multiple Sclerosis Platform, a code of best practice was drawn up on the basis of this report and the resolution which accompanied it.
The matter is really extremely important as the tragic situation facing multiple sclerosis sufferers is not reflected in statistics. As the participants at this conference pointed out, and as we heard during our previous debate on the subject, mortality statistics often state as the cause of death the failure of the pulmonary or the cardiovascular system, but do not mention that the primary cause of the pulmonary failure was simply muscular paralysis and that the patient suffocated, or that the cause of the cardiovascular failure was multiple sclerosis.
Therefore, the statistics often do not provide us with the relevant information about how many people are seriously ill, how many suffer and how many die as a result of this illness. Multiple sclerosis sufferers are ill for many years. In the end, the cause of their death, statistically speaking, it pains me to say, is an entirely different disease. The Committee on Petitions met multiple sclerosis sufferers, we participated in these conferences and, during our mission to Berlin, we met the Minister of State of the German Government, Günter Gloser, with whom we discussed the matter, as the petitions committee of the German parliament is also dealing with the issue.
Today, I would like to put a question to the Commission and to ask it to state the means, methods and efforts that it has undertaken to implement the European Parliament's resolution and the code of good practice that was drawn up on the basis of the resolution. I would be very grateful if the Commissioner could answer this question.
Madam President, I would like to begin by saying that we acknowledge, understand and appreciate the seriousness of this disease. Not only is it a serious disease, but it also affects young men and women in Europe and all over the world in the most productive period of their lives; people who have usually already formed their own families, have young children, have all their life ahead of them and then have to go through these difficulties.
Also, we appreciate the importance not only of the European Parliament's resolution but also of the code of best practice, which was drafted by the Platform.
As I have already said, the Commission also participated in the first European conference on multiple sclerosis last month, and that conference was organised in the context of our public health programme. It was a project funded by the programme 'Multiple Sclerosis - the Information Dividend' and led by the European Multiple Sclerosis Platform.
Of course, many of the aspects relating to this disease have to be dealt with by the Member States, so it is a gradual process that will take some time, but the Commission is there to help, support and encourage.
At the conference, many essential points were presented concerning the follow-up to Parliament's resolution of 2003, especially regarding the discriminatory treatment afforded to people with multiple sclerosis. The Commission is taking action in the main fields covered by the proposal regarding a code of good practice on the right of people affected by multiple sclerosis to quality of life. Some actions target multiple sclerosis directly; others are of a more general or, let us say, horizontal or generic nature but, again, they are of benefit to the issue of multiple sclerosis as well, for example, the issue of equal rights and access to treatment and therapies for multiple sclerosis. The Commission, within its more general framework of safe, high-quality and efficient health services, is reinforcing cooperation between Member States. It is helping create reference networks for diseases, exchange of best practice and centres of reference, and the objective of these will be to ensure equal rights to patients and equal level of treatment all over the European Union. So, once these networks are established, they can cover multiple sclerosis as well, especially with centres of reference and exchange of best practices.
On research, on the other hand, we have a more directly targeted agenda and initiatives. The seventh Framework Programme includes collaborative activities on research into brain-related diseases, human development and ageing, with particular emphasis on how to turn basic discoveries into clinical applications. One first call proposal for this topic was neuro-glia interaction in health and disease, which is of direct interest to the multiple sclerosis research community. Also, under the preceding programmes (the fifth and the sixth), the Commission funded 18 projects on multiple sclerosis, the largest of which, in the sixth programme, totalled EUR 11.4 million and related to neuro-protective strategies for multiple sclerosis.
On the issue of employment and discrimination, which is important for us, Directive 2000/78/EC already prohibits discrimination based on disability in employment, occupation and vocational training, and requires employers to put in place reasonable accommodation tailored to the individual case to enable a person with a disability to work or undertake training.
The Commission is committed to encouraging actions and promoting strategies for the adaptation, and reintegration into working life, of affected persons.
On the issue of participation and empowerment, the project I mentioned earlier, 'Mutliple Sclerosis - the Information Dividend', will facilitate consensus on agreed European quality standards on information about multiple sclerosis, which has to be accessible, delivered in a timely manner by appropriately skilled and experienced professionals and provided in an equitable and efficient way.
Finally, I would like to inform Parliament that the Commission intends to discuss with Member States a proposal for a large European consensus conference on neuro-degenerative diseases, including multiple sclerosis, to be held in 2009 or 2010, and the Commission will be able (on the basis of conclusions endorsed both by public and private stakeholders at that conference) to propose a communication or other relevant policy initiative, including specific actions in all the fields of disease prevention, research and management of this group of diseases. We will, of course, keep Parliament informed of all the next steps.
on behalf of the PPE-DE Group. - (NL) Madam President, Commissioner, ladies and gentlemen, it is indeed three and a half years ago that Parliament, in a resolution to both the Council and the Commission, asked for important measures to support European citizens suffering from MS. As the Commissioner already pointed out, much progress has indeed been made. Whilst on behalf of Parliament, I expressed our support at this conference on 29 May, I would still like to put three specific questions to the Commission.
The code of good practice should indeed be circulated and adopted in all Member States as quickly as possible. Is the Commission prepared to make information on MS available in a similar form on the EU's health portal for all patients?
My second question is about the MS concept project that was launched recently within the framework of the health programme and funded by the Commission. This project must lead to an MS register that can be used by everybody. Will the Commission be supporting this financially?
Finally, I should like to ask you whether the Commission will be taking any further initiatives in terms of framework legislation, in which priority is given to safeguarding MS patients' jobs?
on behalf of the PSE Group. - Madam President, I would like to thank Mr Libicki for taking the initiative of bringing this matter before the House tonight. I welcome also my own opportunity to make a contribution to this debate.
As regards the treatment of people with multiple sclerosis, and indeed the prevention of their marginalisation from society, there is a huge disparity in the way in which people affected by multiple sclerosis are treated across the European Union. Consequently, many thousands of people and their families suffer unnecessarily a poor quality of life. Access to essential drugs, therapies and services, are too often not driven by need, but by where a person happens to reside and whether their government invests sufficiently in those needs. It is a sad fact that it is not always the case of Member States not having the resources to provide such care and services. My own country, Ireland, is a prime example. We have had 10 years of enormous economic growth and wealth, and yet we still have one of the lowest ratios of neurologists to patients among the EU's wealthy nations. We need more research to advance our understanding of the illness and how best to treat it. Regrettably, in this House we constantly face opposition to such research, particularly embryo stem cell research, which offers the best hope for making advances.
Finally, it is not appropriate to allow a situation to continue in which citizens of the European Union are treated unequally. While I acknowledge that it is primarily a responsibility of the Member States to deliver health care, it is also a responsibility of the European Commission to ensure that equality is applied across the board. I would like to see them sponsoring a 'race to the top' in terms of services for people with disabilities generally, but certainly people with multiple sclerosis. I believe publication of the progress being made by Member States signing up to this code of conduct would help drive that race to the top.
on behalf of the ALDE Group. - Madam President, there are approximately 400 000 people with multiple sclerosis within the EU. Louise McVay's petition brought our attention to MS in 2003 and it is only right that, three and a half years on, the Commission reports on the progress it has made in ensuring that the code of best practice, in particular, is implemented.
The 2003 resolution called for equal access to health care for people with MS, but some drugs, like beta interferon, are still not uniformly available. In the UK we have a postcode lottery for this drug, with availability depending on where someone lives. In Poland only 1% of people with MS are treated with disease-modifying drugs, compared to 50% in Sweden.
People with MS should be cared for in the best way possible, as called for by the code of best practice. It also calls for people with MS to be able to retain their jobs and obtain sufficient help and support to remain in mainstream society. That is why, as the Commissioner said, it is so important for the Employment Directive 2000 to be implemented equally across the EU. This year is the Year of Equal Opportunities for All. Let us hope that it is also the year that we get a firm timetable for specific directives to outlaw discrimination in access to goods and services as well.
on behalf of the GUE/NGL Group. - (PT) This debate on measures to assist EU citizens with multiple sclerosis is of the highest importance. It is important to point out that measures have been taken on the basis of the December 2003 resolution aimed at giving greater visibility to the disease and at preventing discrimination against the 400 000-plus sufferers in the Community alone.
It is vital that the Commission attach major importance to research aimed at speeding up the development of more effective treatment of all forms of multiple sclerosis and that it take into account the code of best practice on this matter drawn up by multiple sclerosis societies in the Member States and the European Multiple Sclerosis Platform. I should therefore like to ask the Commissioner what he intends to do to ensure equal opportunities for multiple sclerosis sufferers and to raise awareness among the Member States so that they pay greater attention to the problem.
on behalf of the IND/DEM Group. - Madam President, people who live with MS came to us in the Committee on Petitions to alert us to the discrepancies in treatment and opportunities for people with MS across the EU. Geography should not determine whether your disease goes into remission or progresses.
In my own country of Ireland, we have one of the lowest ratios of neurologists to patients: 17, where we should have a minimum of 39, a fact that negatively affects the outcome for Irish patients.
I would like to correct Mr De Rossa: stem cells obtained from the destruction of embryos have, to date, produced no treatments, whereas stem cells from cord blood have produced over 70 treatments, and it is to be hoped that, some day, there will be a treatment for MS.
Finally, I would like to point out that, in spite of modern medicine and the abundance of food and water, the burden of disease in the EU is increasing. Why? Because instances of MS and every other autoimmune condition, of which there are many, are on the increase. There is a widespread breakdown in the functioning of the human immune system. This is a crisis that we should not ignore. It is time to take an honest look at the unnatural and constant way in which modern life bombards the human immune system from its earliest stages, resulting in problems like poor immune development and immune collapse...
(The President cut off the speaker)
(PL) Madam President, in 2003, the European Parliament adopted, by a decisive majority, a resolution on the unequal treatment of multiple sclerosis sufferers in the European Union. At the time, the blatant discrimination affecting many multiple sclerosis sufferers in Europe resulted in Parliament asking the Commission to draw up a code of best practice to which all Member States should adhere.
Four years have passed and the problem of MS has returned with double the impact as a result of the appalling situation facing sufferers in the new Member States. In terms of the number of MS sufferers living there, Poland ranks third in Europe. However, in contrast to the first and second place countries where 30% of sufferers have access to standard treatment only 2% of MS suffers in Poland have access to standard care. The situation is similar in Romania, Bulgaria, Slovakia and Hungary. If we also consider the fact that MS is an illness that affects young people and is the second most frequent cause of disability in Europe, the conclusions are obvious. I would therefore like to ask you to compare Parliament's common position on MS with the results of the Commission's work, particularly taking into account the situation faced by MS sufferers in the twelve new Member States.
(EL) Madam President, Commissioner, multiple sclerosis should - and must - be recognised through better support for sufferers and by finding practical solutions. This can be achieved through equitable access for citizens to health services and through the equitable provision of all effective means.
There are broad differences between the Member States in the quality of care. The adoption of the Code of Best Practice proposed by the European Parliament is an expression of our political will to determine uniform methods of care and rehabilitation activities. This will support the right to an independent life, which depends on the provision of prompt and suitable health and social care for dignity and independence.
At the same time, the aim is to have more, better coordinated research. The McBay case illustrated how even one citizen fighting alone is enough to turn the attention of the decision-makers to cases which may be unheard of sometimes or overlooked. The emphasis must be on joint efforts by the Member States and their experts to remove the obstacles, Commissioner.
What role will the Commission play?
Madam President, almost everybody knows that true equality in the 27 Member States is but an elusive dream. This is particularly so in the field of health care, and it is most obvious when dealing with complex neurodegenerative disorders such as MS, which require highly specialised diagnosis and treatment centres. Yet, in this most important area for citizens' wellbeing, namely their health, our Treaties let us down disappointingly, as they place this area under the sole competence of Member States.
Strangely enough, those responsible for making and maintaining the EU Treaties seem to care more about equality in business and marketing matters than about our health. Perhaps this debate on MS will lead to some wiser thinking and be the catalyst for changing this unsatisfactory and, in many respects, shameful state of affairs for the benefit of our citizens.
(PL) Madam President, there are around 60 000 MS sufferers in Poland, which ranks Poland in third place after Germany and the United Kingdom. However, in those countries, around 30% of sufferers have access to immunomodulating therapy, whereas in Poland barely over 2% of patients can obtain this treatment. This is mainly due to a lack of funding and it is a problem that also affects the treatment of many other diseases, including cancer.
MS is currently an incurable disease, resulting from an impaired immune system, which leads to damage of the myelin sheath. Immunomodulating treatment is expensive, as is physiotherapy.
In Poland, any resolutions passed are not implemented mainly due to economic reasons and the crisis in the health service, the transformation of which has resulted in poor organisation and privatisation. The costs of medicines produced by Western companies are also prohibitively high. In my opinion, the European Parliament could try to influence these companies to prevent them from exploiting poorer patients and taking away their basic human right, namely the right to protect their health and to have access to medical treatment.
Madam President, I would like very briefly to thank the Members for this interesting and very useful debate. It will give us ideas and inspirations on how we can proceed with this important issue in the future.
I should like to give some information on the questions that have been posed. First of all, creating the link to the health portal is already under way; as we speak, it may have been done already. So, access to this information through the health portal will be made available to all citizens very soon, if it is not already available.
The Commission will support the creation of a European register on multiple sclerosis, which will mostly be based on the existing registers in some Member States and expanded to include the other Member States. More importantly - because we have to be practical as well -funds to support this initiative will be provided under the seventh Framework Programme.
On other issues, of course, many pieces of legislation are already in place, such as the issue of discrimination and access to work. However, based on the outcome of the conference which will take place in the future, which I mentioned in my opening speech, and on the discussion with the stakeholders, we will see if there is also a need for new legislative initiatives and consider what steps have to be taken. We will then, of course, be ready to proceed with new initiatives.
Overall, as you know, we are dealing with inequality; it is a difficult issue. It was a priority of the UK Presidency and has been taken over by the Commission and the other Presidencies as well. But we have to live within the realities - the existing legal and Treaty realities of the European Union, the issue of competences, how much the Commission can oblige Member States in certain areas of health. Most is done through guidelines and recommendations. Even under the proposed Constitution as it stands, provision of health care remains the sole competence of the Member States. So, we try to encourage, coordinate with and support the Member States, and we will raise this issue with them whenever possible but, at the end of the day, this specific area of health care provision is the responsibility of the Member States. That does not mean that we will not continue encouraging them to proceed, to follow the code that has been mentioned and to take other steps, but I believe that, through our health service initiatives (we will be presenting a proposal before the end of the year), we will be able to tackle some of these aspects and, of course, I will be happy to continue discussing these with you.
The debate is closed.
The vote will take place on Wednesday.
Written Statements (Rule 142)
It is not easy to take part in a debate on a disease that affects over 400 000 people in Europe, with a new case every four hours. It is not easy because multiple sclerosis, the causes of which remain largely unknown, affects young people in particular, people of my own age who see their ambitions and dreams for the future crushed without warning, not to mention the impact on their daily lives.
Today, however, there is tangible, genuine hope thanks to the important and encouraging progress made through scientific research, with determined work day after day taking new steps towards identifying causes, mechanisms and cures for the neurological collapse brought on by multiple sclerosis.
At this stage our chief duty is to promote, support and encourage this research, including financially; it must be free from conditions and from limitations and fears, which are often bigoted and promote other agendas.
At the same time, all the commitments made by the European Commission in its 2003 resolution must be honoured, in particular with regard to drawing up a code of best practice.
I also believe that it is the specific duty of the Community institutions to promote and support the work of all associations, such as the AISM [Italian Multiple Sclerosis Association] in my country, which, with dedication and professionalism, do commendable work and provide targeted help for those affected by multiple sclerosis and their families.


Calendar of part-sessions: see Minutes