Answer given by Mr Kyprianou on behalf of the Commission

24.8.2006

1, 2, 4 and 5. The Honourable Member is referred to Written Question E‑3469/03 by Bart Staes, Philip Whithead, Catherine Stihler and Margrietus Van den Berg[1].

Responsibility for the organisation and delivery of health services, including treatment, protection of citizens affected by the post-polio syndrome and measures related to detection and diagnosis, lies with the Member States.

In the area of rare diseases, the EU public health programme 2003‑08 aims at improving, through the support of collaborative projects, the exchange of information and sharing of good practice on rare diseases and, as such, it is open to proposals of actions concerning post-polio syndrome.

The programme also aims to provide support for improved education and knowledge tools for health professionals, patients and carers of those suffering from rare diseases. Details of these projects can be found on the Commission web site: http://europa.eu.int/comm/health/ph_threats/non_com/rare_diseases_en.htm.

In 2005, a conference on rare diseases was organised by the Commission, NGO groups and the Luxembourg Presidency of the Council to review public health initiatives on rare diseases, pharmaceutical and orphan drugs perspectives, research issues, and patients’ and carers’ concerns. A follow-up conference is planned for 2007.

3. Research on poliomyelitis was funded essentially through the fourth EC framework programme. Actions were focused on molecular diagnostics, on optimisation of prevention and surveillance, and in a more global context, on legal and social aspects of vaccine research and vaccination policies in Europe.

The EU framework programmes have, in the past, funded several projects related to disabilities which might be of benefit to patients suffering of the post-polio syndrome. However, no specific projects have been funded on post-polio in the recent EU health framework programmes. A project proposal covering the topic of post-polio syndrome was received during the fifth framework programme (FP5), in the area ‘chronic and degenerative diseases’. It was evaluated by independent experts but was not deemed of sufficient quality to be funded by the Community. More recently, in the quality of life programme (under FP5), 16 projects were funded in a specific action line on ‘Research relating to persons with disabilities’, for a total of EUR 20.6 million. In the sixth framework programme (FP6), the theme is covered under the so called Priority 8 ‘Support to policies’, with a total of circa EUR 6 million dedicated to the ‘Quality of life issues relating to handicapped/disabled people (including equal access facilities)’ action line. The emphasis has been placed on independent living and active inclusion into society through themes such as accessibility of the built environment, promotion of employment and increased analysis capacity at EU level.

In its proposals for the seventh research framework programme [2] and the specific programme ‘Cooperation’ implementing this seventh framework programme[3], the Commission has, under the Health theme, proposed research into the brain and brain-related diseases to address neurological diseases and disorders, including regenerative and restorative therapeutic approaches. Furthermore, research into rare diseases with focus on preventive, diagnostic and therapeutic intervention will be promoted. In addition, a significant portion of the Health theme will be dedicated to the objective of optimising the delivery of healthcare to European citizens. This activity will notably aim at providing the necessary basis for more effective strategies of health promotion, disease prevention, diagnosis and therapy.

6. Information on this condition, including developments on polio in the 25 Member States can be found widely on web sites and in the literature. The long-term effects of poliomyelitis include also post-polio syndrome. In the past, when the muscles of the lungs were affected, polio almost always led to death. Nowadays only 1‑2 % of persons infected with polio get symptoms related to nerve damage. The remainder will have no symptoms or a minor flu-like illness. After some years, the overburdened nerve cells can sometimes weaken and fail. This results in new muscle weakness, called post polio syndrome.

7. No scientific evidence currently exists to demonstate any relations between vaccines and post polio syndrome. Polio vaccine still remains the most important tool to eradicate poliomyelitis worldwide.

• [1] OJ C 78 E, 27.3.2004.
• [2] COM(2005)119 final.
• [3] COM(2005)440 final.

OJ C 328, 30/12/2006