MEDICAL TRAVEL: A NEW EUROPEAN CHALLENGE European Parliament - Brussels, March 3rd 2016 Cittadinanzattiva – a brief introduction Cittadinanzattiva is a non-profit and consumer organization founded in Italy in 1978 It is independent from political parties, trade unions, private companies and public Institutions Its main objectives are: the promotion of civic participation the protection of citizens’ rights Citizens: a fundamental resource for democracy It has +30 years experience in the protection of citizens' rights in the health sector: Since 1980: Tribunal for Patients’ Rights (TDM) - more than 200 local points and volunteers 84 Citizen Advisory Centres (PIT) providing guidance, information and protection for free Since 1996: National Coalition of Associations for Patients suffering Chronic Diseases (CnAMC) active role in the society opportunity to participate in everyday policy-making

Active Citizenship Network – a brief introduction Active Citizenship Network (ACN), created in 2001, is the European branch of Cittadinanzattiva A flexible network of more than 100 EU civic and patient organizations Member of: EU Health Policy Forum (EU Commission-DG Health and Food Safety) Active Citizenship Structured Dialogue Group (DG Home) Our commitment at EU level: European Charter of Patients’ Rights (2002) European Patients’ Rights Day (since 2007) celebrated every year on 18 th April with local, national and EU events all over Europe 8. Right to respect of quality standards 9. Right to safety 10. Right to innovation 11. Right to avoid suffering and unnecessary pain 12. Right to personalized treatment 13. Right to complain 14. Right to compensation 1. Right to preventive measures 2. Right to access 3. Right to information 4. Right to consent 5. Right to free choice 6. Right to privacy and confidentiality 7. Right to respect patients’ time MEDICAL TRAVEL: A NEW EUROPEAN CHALLENGE European Parliament - Brussels, March 3rd 2016

The MEPs Interest Group “European Patients' Rights and Cross-border Healthcare” MEPs Interest Group on “European Patients' Rights and Cross-border Healthcare” (2015) The idea to encourage a MEPs Interest Group focused on patients’ rights is linked to the request of 100 civic and patient organizations sent to the EU Parliament in May 2015 to recognize officially the value of citizens’ initiatives Strengthen the protection of patients’ rights in the European legislation, starting from the adoption of those included in the European Charter of Patients' Rights Promote initiatives that encourage and ensure among EU countries the respect of the European legislation focused on patients’ safety and the protection of their rights. It could be done with the involvement of civic and patient associations, starting from the Directive 2011/24/EU on patients' rights in cross-border healthcare (is the first time that patients’ rights is explicitly included in a EU legal context) MEDICAL TRAVEL: A NEW EUROPEAN CHALLENGE European Parliament - Brussels, March 3rd 2016

Our commitment on the issue of cross-border healthcare assistance (I) MEDICAL TRAVEL: A NEW EUROPEAN CHALLENGE European Parliament - Brussels, March 3rd 2016 The European Charter of Patients' Rights, drawn up by our Organization in 2002, lists the inalienable rights of patients which each EU country should protect and guarantee In Italy, with our Tribunal for Patients’ Rights and Citizen Advisory Centre on Health, we provide daily information, advices and assistance also to the citizens who travel abroad for treatment Cittadinanzattiva has been the only Italian association involved as reviewer for the civic evaluation of the App “European Health Insurance Card” produced by the European Commission and DGSANCO in 2012 “Manifesto for the implementation of the Right of European Patients to make an informed choice”, drafted in 2013 with 31 Civic & Patients Associations coming from 13 EU Countries and 2 EU Networks May 2013: “European coordination of patients’ associations and other stakeholders”, informal EU network coordinated by ACN of 31 Civic and Patients Associations and other stakeholder interested to work together for the implementation of the Directive, sharing information, good and bad practices, etc.

MEDICAL TRAVEL: A NEW EUROPEAN CHALLENGE European Parliament - Brussels, March 3rd 2016 Our commitment on the issue of cross-border healthcare assistance (II) May 2013: “VII European Citizens' Rights Day: patients' involvement and Cross-Border Care”, attended by EU and National Institutions, 40 patients’ associations, healthcare professionals and stakeholder of EU networks “Make them informed! Ask your State to inform citizens on EU health rights”. Online petition, signed by hundreds of EU citizens to ask their National Parliament to involve the Directive in their legislation 2013 / 2014: European tour to talk about the Directive. Public debates with National Institutions and patients associations to share the experience from several Countries. October 2013: Presentation to the Italian Institutions of the report “Care Without Borders: is it possible now?” October 2013: “The right to information and free choice in a European perspective. Patients' Rights Have No Borders”, a report with an updated state of the implementation of the Directive in 12 EU Countries and Civic Recommendations, presented also to the DGSANCO by a delegation of Active Citizenship Network (composed by 10 Association coming from 8 Countries)

Being treated abroad: what happens in Italy MEDICAL TRAVEL: A NEW EUROPEAN CHALLENGE European Parliament - Brussels, March 3rd 2016 Reasons% Surgery35 Innovative therapies29 Diagnostics18 Specialized consultation13 Transplantation5 Therapeutic area% Oncology32 Neurology30 Rare diseases17 Cardiology13 Orthopedics8 Problems% Prior-authorization delayed36 Lack of information27 Authorization denied23 Difficulty to obtain reimboursement 14 Data refer to 269 reports received by citizens

MEDICAL TRAVEL: A NEW EUROPEAN CHALLENGE European Parliament - Brussels, March 3rd 2016 Being treated abroad: what happens in Malta Patients’ expectations often compromise patients’ medical needs, trust and geographical proximity

MEDICAL TRAVEL: A NEW EUROPEAN CHALLENGE European Parliament - Brussels, March 3rd 2016 Being treated abroad: what happens in Malta Total Number of Maltese patients receiving treatment abroad in 2014 Speciality 26Paediatric Cardiac Surgery 46 Haematology ( Oncology) 18Neuro-Surgery 36Ophthalmology 22Oncology All data: University of Malta Disease/conditions that would lead to seeking treatment abroad:

MEDICAL TRAVEL: A NEW EUROPEAN CHALLENGE European Parliament - Brussels, March 3rd 2016 Being treated abroad: what happens in the German-French border region The German-French border region is one of the most actives within the EU: approximately persons cross the border between Strasbourg and Kehl every day Directive 2011/24 on the application of patients’ rights in cross-border healthcare only had a moderate effect at the German-French border 3 main reasons: 1.Legal complexity and lack of transparency Directive 2011/24, allows every patient to seek ambulatory healthcare without prior authorization from his/her social security system. The patient will be reimbursed according to the rates of the country where he gets treatment. In conformity with article 8, every Member State has its own list of exceptions about which prior authorization is necessary. So, in a border region the exceptions may differ. Every Member State should make available to the public the list of exceptions and all relevant information concerning prior authorization.

MEDICAL TRAVEL: A NEW EUROPEAN CHALLENGE European Parliament - Brussels, March 3rd 2016 Being treated abroad: what happens in the German-French border region 2.The need of enhanced information and a real guidance The NCPs work very differently in the Member States. A vulgarisation of the very technical information is desperately needed: simple language should be used. To make the directive work, appropriate information are needed for both citizens and doctors, hospitals and social security services alike. 3.Restrictive interpretation of prior authorization from social security services Directive 2011/24 coexists with regulation 883/2004 on emergency care (and 987/2009). In some cases happened that prior authorization has been required even in cases of extreme urgency, even though regulation 883/2004 foresees that in case of emergency, both for ambulatory and hospital care, no prior authorization is necessary. Directive 2011/24 states in article 8.1 that prior authorisation should only be restricted “if necessary and proportionate”. Currently in many border regions, it seems that prior authorisation is used to control the patient flow, even if a service cannot be adequately provided or provided at all. All data: ECC France

EU benchmarking MEDICAL TRAVEL: A NEW EUROPEAN CHALLENGE European Parliament - Brussels, March 3rd 2016 Less than 20% of citizens feel that they are informed about their cross-border healthcare rights

MEDICAL TRAVEL: A NEW EUROPEAN CHALLENGE European Parliament - Brussels, March 3rd 2016 Only 10% of citizens are aware of the National Contact Points (NCPs) EU benchmarking

Major concerns MEDICAL TRAVEL: A NEW EUROPEAN CHALLENGE European Parliament - Brussels, March 3rd 2016 The implementation process at national level is still slow Involvement of citizens/patient organizations should be a priority Information to patients on their rights under the Directive is currently lacking Patients should not anticipate the cost of treatments The provisions of the Directive may be influenced/hindered by cultural differences Language is one of the main obstacle in reading/understanding medical prescriptions and getting information Cooperation with foreign National Contact Points is still largely lacking

Some proposals MEDICAL TRAVEL: A NEW EUROPEAN CHALLENGE European Parliament - Brussels, March 3rd 2016 Build a network of all the NCPs in order to have a proper dialogue with the stakeholders identified by the Directive, including patient associations NCPs should hold annual meetings with patient organizations at national level to assess the situation Develop guidelines, together with the European Commission and patient organizations, to better inform citizens Realize an information campaign, with the support of the civic and patient organizations Keep monitoring the situation and collect data at European level, with the direct involvement of both civic and patients associations Collaborate with DGSANTE to keep updated the APP “European Health Insurance Card”, in order to enter the information contained in the Directive, the details about the NCPs, the European References Network, etc.. Collect, in each Member State, evidences on inequalities in access to healthcare and how they affect patients as well as on good practices to share

CITTADINANZATTIVA ONLUS ACTIVE CITIZENSHIP NETWORK (ACN) HEADQUARTERS Via Cereate, Rome – Italy REPRESENTATIVE OFFICE TO THE EU Rue Philippe Le Bon, Brussels - Belgium Bianca Ferraiolo Our contacts MEDICAL TRAVEL: A NEW EUROPEAN CHALLENGE European Parliament - Brussels, March 3rd 2016