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On February 29 Bulgaria will observe for the first time the International Rare Disease Day |
This is good enough an opportunity to remember the more than half million Bulgarians, who suffer from rare diseases (mucoviscidosis, acromegaly, nervous and muscle dystrophies, some blood diseases). Recent data show that of these about 2000 people receive adequate treatment. There is no treatment for most of the diseases, and the patients die young. Forty three medications have been discovered and used at the European scale so far, but the Bulgarian patients have access to five of them. The average life expectancy of the Bulgarian mucoviscidosis patients for example is 13 years, while in Europe they could live up to 50-60 years.
The number of people with rare diseases is not insignificant at all. According to a 2004 World Health Organization Report, about 20 million people in the European Union suffer rare diseases, i.e. between 6% and 8% of the Community population.
These data provoke me to outline some important aspects of the European Union policy on dealing with rare diseases. Moreover, the right of equal healthcare standard is ratified by the EU Charter of Fundamental Rights, and further the Alliance of Liberals and Democrats for Europe (ALDE), whose member I am, carries out a broad campaign for protection of the rights of the patients.
The past year, 2007, was dedicated to the rare diseases. The European Rare Diseases Organization, which has been established ten years ago, held the 4th European Conference on Rare Diseases in Lisbon. Again in 2007, the new healthcare strategy entitled ‘Together for Health’ was adopted that covers the period 2008-2013. According to this strategy, the high-quality diagnostics, treatment and information for patients suffering from rare diseases are priorities for the European Commission. The European Parliament and the Council decided upon establishing the second Community Action Plan in the field of healthcare (2008-2013), which also covers the socially significant and rare diseases, but please note that the EU activities are outlined within a certain framework: “Further EC-coordinated initiatives on specific diseases will be introduced where these can offer clear added value to actions in Member States.”
Also in 2007, the Committee carried out public discussions and gathered expert statements from the Member States in the field of rare diseases. This process will result in publishing an Announcement on the European activities in the field of rare diseases. The event is expected in November 2008.
The Committee has already established that the Community actions in favor of patients with rare diseases should be based on three major pillars. Attention is being be paid to increasing the compliance between the European programs on public health, on research and technological development, the strategies for orphan medications, and the future health services directive. The EU will encourage the Member States in the development of national health policies aimed at ensuring equal access and prevention, diagnostics, treatment and rehabilitation of patients suffering from rare diseases. At an European Community level, examinations will be carried out, expert centers will be established, the access to information will be improved, new medications will be developed. That means the Community actions will be part of a joint minimum of the common strategy on rare diseases.
It is apparent that the European policy in this field comprises national and community initiatives. The principle, which EU follows, is that the responsibility for implementing the health policy and ensuring the healthcare lies predominantly with the Member States. The EU role does not comprise monitoring or duplicating their work. Cooperation on community level is compulsory, but mainly in areas where the Member States could not achieve results by acting on their own.
The rare diseases are a considerable challenge both for the patients and for our healthcare system. The insufficient level of knowledge in this scientific area, the lack of information among the medical community, the patients and the general public, the lack of or limited access to treatment are all serious problems before the public health within any healthcare system. The need exists for a national policy for those patients that would guarantee they have the same rights as all other patients.
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