# CE2004078EN.01028901.xml

| 27.3.2004 | EN | Official Journal of the European Union | CE 78/289 |
| --- | --- | --- | --- |

27.3.2004

EN

Official Journal of the European Union

CE 78/289

---

(2004/C 78 E/0289)

WRITTEN QUESTION E-3469/03

by Bart Staes (Verts/ALE), Phillip Whitehead (PSE), Catherine Stihler (PSE) and Margrietus van den Berg (PSE) to the Commission

(21 November 2003)

Subject:   Post-polio syndrome

Subject:

During two meetings of the Council of the European Union, the 2384th (Health, 15.11.2001, Brussels) and the 2470th (Employment, Social Policy, Health and Consumer Affairs, 2-3.12.2002), the Council took note of statements made by the Belgian Presidency and the Irish delegation on the need for action at EU level to provide an adequate response to sufferers of post-polio syndrome (PPS).

Can the Commission comment on the kind of action which has already been taken on this matter, more specifically, on the level of:

| 1. | information about the incidence of PPS within the EU, its onset, and availability of current research; |
| --- | --- |

1.

information about the incidence of PPS within the EU, its onset, and availability of current research;

| 2. | treatment available in the Member States for PPS sufferers to rehabilitate them and remedy their condition. |
| --- | --- |

2.

treatment available in the Member States for PPS sufferers to rehabilitate them and remedy their condition.

| 3. | What funds for research and treatment have been made available from the Community budget? |
| --- | --- |

3.

What funds for research and treatment have been made available from the Community budget?

In the absence of any such action hitherto, what is the justification for this lack of follow-up?

Answer given by Mr Byrne on behalf of the Commission

(22 December 2003)

(22 December 2003)

| 1. | Information on incidence of post-polio syndrome, treatments and patient groups is available through projects supported under the Community public health programmes. The Parliament and Council adopted a Programme of Community Action for rare diseases on 29 April 1999 (1). Twenty-four 24 projects have been conducted under this former programme. These can be found at the Europa Website: (http://europa.eu.int/comm/health/ph_projects/rarediseases_project_en.htm).
  Decision No 1786/2002/EC of the Parliament and Council of 23 September 2002 adopting a programme of Community action in the field of public health (2003-2008) (2) includes addressing rare diseases as an important objective. Rare diseases are defined as of genetic origin, life-threatening or of a chronically debilitating nature which are of such low prevalence that special combined efforts are needed to address them. As a guide, low prevalence is taken as prevalence of less than 5 per 10 000 in the Community.
  As regards rare disease projects, that programme prioritises actions of a generalist nature that result in the centralisation of information on many rare diseases and not just on a specific group of diseases or single diseases.
  Unfortunately, and it is the case for the majority of the single rare diseases, no registers or regular surveys exist which routinely give information on the incidence or prevalence of the post-polio syndrome in the Member States. The studies used by the Commission suggest that 20 % to 40 % of people who recover from polio go on to develop post-polio syndrome (PPS). The incidence is estimated as 0,12/10 population with case rates (PPS/polio survivors). Experts appear to be unable to establish a firm incidence rate for the whole population. |
| --- | --- |

1.

Information on incidence of post-polio syndrome, treatments and patient groups is available through projects supported under the Community public health programmes. The Parliament and Council adopted a Programme of Community Action for rare diseases on 29 April 1999 (1). Twenty-four 24 projects have been conducted under this former programme. These can be found at the Europa Website: (http://europa.eu.int/comm/health/ph_projects/rarediseases_project_en.htm).

1

Decision No 1786/2002/EC of the Parliament and Council of 23 September 2002 adopting a programme of Community action in the field of public health (2003-2008) (2) includes addressing rare diseases as an important objective. Rare diseases are defined as of genetic origin, life-threatening or of a chronically debilitating nature which are of such low prevalence that special combined efforts are needed to address them. As a guide, low prevalence is taken as prevalence of less than 5 per 10 000 in the Community.

2

As regards rare disease projects, that programme prioritises actions of a generalist nature that result in the centralisation of information on many rare diseases and not just on a specific group of diseases or single diseases.

Unfortunately, and it is the case for the majority of the single rare diseases, no registers or regular surveys exist which routinely give information on the incidence or prevalence of the post-polio syndrome in the Member States. The studies used by the Commission suggest that 20 % to 40 % of people who recover from polio go on to develop post-polio syndrome (PPS). The incidence is estimated as 0,12/10 population with case rates (PPS/polio survivors). Experts appear to be unable to establish a firm incidence rate for the whole population.

| 2. | Available information related to treatment, rehabilitation strategies, aetiology and diagnostic methods for persons suffering the post-polio syndrome in the Member States may be found in the Orphanet database: (http://www.orpha.net/).
  It may be noted that Article 152 of the EC Treaty provides that ‘Community action in the field of public health shall fully respect the responsibilities of the Member States for the organisation and delivery of health services and medical care.’ |
| --- | --- |

2.

Available information related to treatment, rehabilitation strategies, aetiology and diagnostic methods for persons suffering the post-polio syndrome in the Member States may be found in the Orphanet database: (http://www.orpha.net/).

It may be noted that Article 152 of the EC Treaty provides that ‘Community action in the field of public health shall fully respect the responsibilities of the Member States for the organisation and delivery of health services and medical care.’

| 3. | The Commission's Directorate-General for Research (RTD) has supported research on poliomyelitis essentially through the Fourth 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.
  No particular project has been funded on post-polio syndrome, since this is more of a social and public health issue. A project proposal covering this topic 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.
  The Directorate-General for Research has in the past funded several projects related to disabilities, either in the field of rehabilitation technologies in the Biomed 1 (FP3) and Biomed 2 (FP4) Programmes. 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’. In FP6, the theme is covered under Priority No 8 ‘Support to policies’. Moreover, the Directorate-General for Information Society, through its TIDE Programmes (Telematics Initiative for the Disabled and Elderly, in FP3 and FP4) and its subsequent activities in the IST Programme (FP5) and the e-inclusion action of Priority 2 of the Sixth Framework Programme, has funded a large number of research projects aimed at facilitating integration and rehabilitation of the disabled. |
| --- | --- |

3.

The Commission's Directorate-General for Research (RTD) has supported research on poliomyelitis essentially through the Fourth 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.

No particular project has been funded on post-polio syndrome, since this is more of a social and public health issue. A project proposal covering this topic 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.

The Directorate-General for Research has in the past funded several projects related to disabilities, either in the field of rehabilitation technologies in the Biomed 1 (FP3) and Biomed 2 (FP4) Programmes. 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’. In FP6, the theme is covered under Priority No 8 ‘Support to policies’. Moreover, the Directorate-General for Information Society, through its TIDE Programmes (Telematics Initiative for the Disabled and Elderly, in FP3 and FP4) and its subsequent activities in the IST Programme (FP5) and the e-inclusion action of Priority 2 of the Sixth Framework Programme, has funded a large number of research projects aimed at facilitating integration and rehabilitation of the disabled.

---

(1)  OJ L 155, 22.6.1999.

1

(2)  OJ L 271, 9.10.2002.

2

---