From the News Desk of Jeanne Hambleton
I have just received the following Q&A information. While this is not a recent conversation, it is evidence that fibromyalgia is being discussed in the Europe.
EU QUESTIONS AND ANSWERS
On 28 October 2008, European Commissioner for Health, Ms Androulla Vassiliou answered questions put to her by EU member Mr. Florin Popa (Romania) on EU recognition for fibromyalgia, the need for treatments in Europe for fibromyalgia and the need for more data from research.
Can the Commission state its position on fibromyalgia, as the WHO did in 1992? Does the Commission think that there is a need for action at European level, in the interests of European citizens, in order to avoid the disparities in diagnoses and treatment that exist in all Member States?
In accordance with the Treaties, the benefits that Member States provide under their health systems and the conditions applicable are up to Member States to determine, including with regard to the benefits and treatments provided for specific conditions such as fibromyalgia.
Can the Commission comment on the lack of availability of approved treatments in the EU for fibromyalgia? Millions of people suffering from fibromyalgia across Europe do not have the same access to medicines to treat fibromyalgia as in the US. Following its October meeting, the Committee for Medicinal Products for Human Use (CHMP) took a negative decision regarding the first medicine for the treatment of fibromyalgia in Europe. Patients across Europe were disappointed to hear that a license to approve a drug for fibromyalgia had not been granted. Yet the reality is that in Europe patients are taking medicines off-label. What solution does the Commission see for this specific problem?
The fact that the Committee for Medicinal Products for Human Use (CHMP) proposed a negative decision regarding the market authorisation of a medicine for the treatment of fibromyalgia in Europe does not preclude future authorisation of other proprietary medicines that meet the safety, efficacy and quality requirements laid down in EU legislation.
In order to obtain a treatment for fibromyalgia, there is a need to collect EU data. Can the Commission help collect and receive data and also help with the coordination of national expertise?
The Commission already pointed out that under the current health programme 2008‑13 a proposal for surveillance of and information on musculoskeletal diseases, including fibromyalgia, has been selected and a contract is under negotiation. This project, if the contract can finally be successfully concluded, is expected to contribute to improvement of European data on incidence and prevalence of fibromyalgia as well as information on best practice of diagnosis, treatment and care.
European Commissioner for Health, Ms Androulla Vassiliou on her website said she was honored to have the opportunity to work on issues which ‘intimately touches EU citizens’ everyday lives”.
She writes, “As Commissioner for Health, my portfolio covers three broad areas: public health, feed and food safety and animal health and welfare. Many challenges lie ahead. We need, for example to improve the legal certainty on patients’ rights in cross border health care, to contribute to reducing organ donation shortages, to help combat rare disease in the field of public health or to implement a comprehensive strategy on animal health. I know I can count on the dedication of my services working in the Directorate-General for Health and Consumers and I look forward to a close co-operation with national authorities in the Member States. On my side, I will put all my energy into addressing these important issues. Working on health at EU level can bring about results that can not so easily be achieved by Member States working alone.”
There is a contact box on this website if you have any questions. I could find no references to fibromyalgia. Might have been fibro fog on my part? JH
Mr. Florin Popa, EU Member (Romania) was one of the five MEPs active in health issues at the European Parliament, who helped to initiate the Written Declaration relating to fibromyalgia in conjunction with the European Networks of Fibromyalgia Associations.
EUROPEAN NETWORK of FIBROMYALGIA ASSOCIATIONS
Members of the European Parliament (MEPs) adopt written declaration 69/2008 on fibromyalgia initiated by five deputies and the European Network of Fibromyalgia Associations (ENFA).
Brussels 16.12.2008 – Written Declaration 69/2008 on fibromyalgia has been a success in the European Parliament by finding the necessary quorum of signatories of 393 deputies giving their support. The Written Declaration was initiated by five key MEPs active on health at the European Parliament: Mr. Adamou, Ms. Brepoels, Ms. Dickuté, Mr. Popa and Ms. Sinnott. These MEPs decided to launch the declaration during the celebratory meeting of the 1st European Fibromyalgia Awareness Day in May 2008, organized by ENFA.
The Written Declaration is calling on the European Union to recognize fibromyalgia in Europe as a disease, as WHO did in 1992. It is estimated that 14 million people in Europe suffer from fibromyalgia and the condition is more prevalent with women (87% of total prevalence).
Fibromyalgia is a complex disease with a variety of symptoms in addition to the defining symptom – chronic widespread pain. These include fatigue, non-restorative sleep, morning stiffness, irritable bowel and bladder, restless legs, depression, anxiety and cognitive dysfunction often referred to as “fibro fog.” All of these symptoms cause serious limitations in patients’ ability to perform ordinary daily chores and work and severely affect their quality of life. Some scientists believe that there is an abnormality in how the body responds to pain, and particularly a heightened sensitivity to stimuli.
Fibromyalgia imposes large economic burdens on society as well as on affected individuals. A study shows that an average patient in Europe consults up to 7 physicians and takes multiple medications over 5-7 years before receiving the correct diagnosis. The debilitating symptoms often result in lost workdays, lost income and disability payments.
Research in the UK has shown that diagnosis and positive management of fibromyalgia reduce healthcare cost by avoiding unnecessary investigations and consultations.
Thus, the European Parliament is calling through this declaration, for the European Commission and the Council, to help raise awareness of the condition and facilitate access to information for health professionals and patients, by supporting European and national awareness campaigns; to encourage Member States to improve access to diagnosis and treatment; to facilitate research on fibromyalgia through the work programmes of the EU 7th Framework Programme for Research and future research programmes; and finally to facilitate the development of programmes for collecting data on fibromyalgia.
Educating healthcare professionals, patients and the public to promote better understanding and management of fibromyalgia will benefit patients, healthcare providers and the society. A Written Declaration is a text of up to 200 words on a matter falling within the European Union’s sphere of activities. MEPs can use them in order to launch or relaunch a debate on a subject that comes within the EU’s remit. At the end of the lapsing date (3 months after its launch on 1 September for the declaration 69/2008, the declaration is forwarded to the institutions named in the text, together with the names of the signatories.
Thank You MEP’s, Thank you fibromyalgia supporters!
The written declaration 69/2008 about fibromyalgia reached the quotum on December16th 2008, to be accepted by the European Parliament. This acceptance means that the first but important step on a long way to get fibromyalgia recognised in all the European countries, has been taken.
The awareness of the condition of fibromyalgia by the members of the European Parliament could be an example for national politicians for actively addressing their national governments. ENFA and their members are more than willing to support such activities.