92000E3878

WRITTEN QUESTION P-3878/00

by Anneli Hulthén (PSE) to the Commission

(4 December 2000)

Subject: Resources for sufferers of Creutzfeldt-Jakob Syndrome

Can the Commission guarantee that there will in future be sufficient resources for sufferers of Creutzfeldt-Jakob Syndrome, such as care and rehabilitation? Can the Commission also guarantee that sufficient funds have been set aside for preventive measures and research?

Answer given by Mr Byrne on behalf of the Commission

(15 January 2001)

Article 152 (ex Article 129) of the EC Treaty specifically requires that mldr 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 mldr.

For this reason, the resources for care and rehabilitation are largely under the responsibilities of the Member States.

However, funds for intensifying research on the outstanding questions related to animal and human transmissible spongiform encephalopathy (TSE's) were provided through a European action plan, which was proposed by the Commission in November 1996. This action plan was rapidly adopted by Council and Parliament with a supplementary budget of 35 million bringing the total amount of Community funding up to 50,7 million. Since then, 54 projects involving 150 research laboratories, throughout Europe, have been funded by the Commission under the research Framework Programme 4 (Biomed, Biotech and FAIR programmes).

Research efforts are being pursued in the Fifth framework programme where all aspects foreseen in the action plan, such as: clinical and epidemiological research on human spongiform encephalopathies (SE), the infective agent and its transmission mechanism, diagnosis of (SE), evaluation of the risk from (SE),

treatment and prevention of (SE), and co-ordination of research activities between Member States, are included in the Quality of Life programme. Three new projects have been selected for funding to pursue the continuous surveillance of Creutzfeldt-Jakob disease (CJD) cases, harmonise diagnostic methods and investigate manufacturing processes to reduce risks of contamination. Forthcoming calls for proposals in the Quality of Life programme this year and in 2001 will offer a further opportunity to strengthen this effort and focus on critical areas where research is needed.

In addition, as far as Community actions in the area of public health are concerned, surveillance of vCJD is foreseen under the Decision No 2119/98/EC of the Parliament and of the Council of 24 September 1998 setting up a network for the epidemiological surveillance and control of communicable diseases in the Community(1).

Furthermore, collaborative networks of persons directly or indirectly affected by vCJD would have the possibility of submitting project proposals in reply to call for proposals published in the framework of the Community action programme on rare diseases (1999-2003) or of the Community action programme for the prevention of AIDS and other communicable diseases (1996-2000; prolongation 2001-2002 proposed by the Commission).

(1) OJ L 268, 3.10.1998.