Patients mobility across EU health services

The European Commission launched a consultation on health services in September 2006, with a deadline for responses by the end of January 2007. Eurordis didn’t miss this opportunity to voice the needs of rare disease patients in Europe. ‘High-quality health services are a priority issue for European citizens,’ says the Public Health website of the European Commission. ‘Rights to healthcare are also recognised in the Charter of Fundamental Rights of the EU. Health systems and health policies across the EU are becoming more interconnected than ever in the past. [...] This increased interconnection raises many health policy issues, including quality and access in cross-border care; information requirements for patients, health professionals and policy-makers; the scope for cooperation on health matters; and how to reconcile national policies with European obligations in general.’ The consultation was launched to provide input into the development of a Community framework for safe, high quality and efficient health services. ‘Eurordis decided to launch its own consultation process to gather the needs and wishes of rare disease patients in Europe. Those needs were summarised in a document submitted to the Commission in January 2007,’ says Flaminia Macchia, European Public Affairs Officer at Eurordis. ‘Many patients - members or not - contributed to the discussion and provided rich input, which we hope will help shape the future Community framework.’

The main elements covered in the Eurordis document are the following:

• Patient mobility across European borders is a reality for people living with rare diseases today; mobility happens across regions of a same country as well as across Member States.
• Patients should be authorised to seek healthcare in another country, not only when care is not provided in their country of residence, but also on other grounds such as better quality care or second opinion. It should not be up to patients to demonstrate either the absence of provision of care in their country or the better quality of care in the other country.
• No prior authorisation to seek healthcare in another country should be requested from rare disease patients. If derogation for rare disease patients is not possible, a simple notification procedure should substitute the authorisation process. Prior authorisation would be acceptable only if the response is fast (a maximum of 30 days); if swift appeal is possible; and if levels of reimbursement are clearly indicated.
• If the distinction between hospital and non-hospital care should remain, a standard definition - applicable across the EU - should be provided.
• No advance payment should be requested from patients, even more so as cost of care for rare diseases is often very high. Expenses incurred by care providers should be reimbursed by the healthcare system of affiliation.
• Liability remains with the healthcare provider.
• There should be a Community policy for the establishment of local Centres of Expertise on Rare Diseases and European Reference Networks. Networks of centres of expertise are useful for the identification and comparison of care providers by patients; for improving research; for optimising care; for reducing cost; and for monitoring health indicators. Rare disease patients should have the right to seek a second medical opinion in another Member State, regardless of quality of care provided by their local centres.
• Access to medical treatment and healthcare should be covered by a European Regulation and not an EU Directive.
• Eurordis’ contribution also underlines:
• the weight of the financial burden put on rare disease patients by their healthcare needs - whether at home or in another country;
• the significant cultural and language barriers to patient mobility;
• and the current lack of information on the quality and location of healthcare available to rare disease patients.

 
The Commission has now published all contributions received - including Eurordis’ - on its website. These contributions will be analysed with a view to presenting the results at the informal meeting of the Health Ministers scheduled for 19 and 20 April 2007 in Aachen. The Commission is due to present a draft directive or regulation at the end of 2007 or, more probably, in the first half of 2008.
 
For more information:
Background on patient mobility
Read the consultation document
Read Eurordis’ contribution.
 

This article was previously published in the April 2007 issue of our newsletter.

Author: Jerome Parisse-Brassens
Photos: family © European Community, 2003; baby & doctor © Jim Gathany / Centers for disease control and prevention; patient © galileo