WRITTEN QUESTION E-2027/02

by Cristiana Muscardini (UEN) to the Commission

(9 July 2002)

Subject: Assistance for children with haemophilia in the ex-Soviet Union

The situation of children with haemophilia is particularly serious in the ex-Soviet Union because of the scarcity of clotting factors, which are vital for treatment of the illness. None of them can afford this type of therapy due to the high costs of, on average, EUR 500 per month. They suffer pointlessly, confined to wheelchairs due to their articular haematoma, regularly hospitalised for transfusions and isolated from their peers, since they cannot play.

Public, private and voluntary bodies, in Italy, and of course also in other European countries, provide assistance to the children through consignments of clotting factors in the knowledge that they will not be enough to cover all their needs. The different voluntary programmes are not coordinated and sometimes come up against bureaucratic obstacles in relation to customs and health regulations.

Therefore, will the Commission:

1. promote the establishment of an information network at Community level of the local centres of blood products in order that at least a small quantity of clotting factors are distributed to the ex-Soviet countries?

2. call on governments, and in particular health ministers, to undertake to coordinate financial assistance for the collection and authorised despatch of clotting factors in cooperation with the health minister of the Russian Federation?

3. undertake to offer its services for humanitarian aid in terms of monitoring requirements and coordinating the authorised despatch of clotting factors in cooperation with the Russian authorities?

Answer given by Mr Patten on behalf of the Commission

(13 September 2002)

The Community's aid instruments for Russia and NIS are limited to technical assistance through the Tacis programme and emergency humanitarian aid through the Humanitarian Aid Office (ECHO). The treatment of haemophilic children does not, unfortunately, fall into either category. Neither programme has the capacity to maintain any long-term development programmes involving continuous monitoring and dispatch of physical goods. Consequently, the focus of support for haemophilic children should be the relevant local organisations, like the Russian Haemophilia Society.

However, Tacis does have a facility to provide support to civil society and local initiatives (IBP Programme). One of this programme's objectives is to support partnership projects between the Community and local non-governmental organisations (NGOs) in the area of promotion of sustainable health and social care for populations at risk by up to EUR 200 000 over two years. Groups working with haemophilic children would be eligible to apply, for instance to establish an information network of NGOs to address the health problems of haemophilic children. The next call for proposals for IBP should be announced in December 2002 with a closing date for receipt of applications in mid March 2003. Full details including a brochure are available on the Commission's website at http://europa.eu.int/comm/europeaid/projects/index_en.htm

Currently, a Directive on the quality and safety of blood and blood components is under discussion in the Parliament and the Council, which will provide for regular meetings with competent authorities in Member States and representatives of blood establishments. The Commission intends to take the opportunity of these meetings to discuss issues related to improving the supply of blood and blood products in the Community and other parts of the world, among which the countries of the former Soviet Union. The Commission understands however that the main problem with the treatment of haemophilia in Russia concerns a lack of diagnostic laboratory equipment and reagents, medicines and access to healthcare in general and therefore goes beyond the specific questions of availability of clotting factors.