Draft EU law on recognising fibromyalgia as a debilitating disease

Subject: Draft EU law on recognising fibromyalgia as a debilitating disease

Fibromyalgia is a systemic disease that causes widespread pain, fatigue, disrupted sleep, and tenderness in the muscles and joints. It is a long-term illness that affects people of all ages and considerably impacts their quality of life. As a matter of fact, the severe and persistent pain caused by the syndrome is so debilitating that, in many cases, those suffering lose their jobs.

The statistics shows that an estimated 19% of Europeans (virtually 1 in every 5 adults or more than 14 million people) are affected.

Although the World Health Organization recognised the disease back in 1992 and Article 168 of the Treaty on the Functioning of the European Union affirms that ‘a high level of human health protection shall be ensured in [...] all Union policies and activities’, fibromyalgia is still not listed in the EU’s official diseases registry or recognised by the national health services in many Member States.

Given that there is no definitive cure for fibromyalgia, can the Commission say what steps it will take to get the national health services in the Member States to recognise this illness as a long-term debilitating disease conferring the right to a fee waiver?

Submitted:18.3.2024

Answer given by Ms Kyriakides on behalf of the European Commission (3 May 2024)

The World Health Organisation is responsible for the international classification of diseases (1). Member States are responsible for the organisation and delivery of health services and medical care (Article 168 of the Treaty on the Functioning of the EU (TFEU)) as well as for social protection systems (Article 153 TFEU) (2). The recognition of diseases for the purposes of conferring the right to a fee waiver is within the remit of Member States.

At EU level, the ‘Healthier Together’ — EU non-communicable diseases (NCDs) initiative (3) was launched in 2022 to support Member States in reducing the burden of NCDs, such as fibromyalgia.

Under this framework, the Commission supports the implementation of related actions with funding under the EU4Health programme. Member States discuss policies and actions to promote health and prevent NCDs in the Expert Group on Public Health (4).

Furthermore, the Commission supports best practice exchange among Member States to promote health and prevent NCDs, via the EU Best Practices Portal (5).

1 ∙ ⸱ https://www.who.int/standards/classifications/classification-of-diseases

2 ∙ ⸱ http://eur-lex.europa.eu/legal-content/EN/TXT/PDF/?uri=CELEX:12012E/TXT&from=EN

3 ∙ ⸱ https://health.ec.europa.eu/non-communicable-diseases/healthier-together-eu-non-communicable-diseases-initiative_en

4 ∙ ⸱ https://health.ec.europa.eu/non-communicable-diseases/expert-group-public-health_en

5 ∙ ⸱ https://webgate.ec.europa.eu/dyna/bp-portal/