Rare diseases aren’t rare. How can European solidarity improve the daily life of 30 million citizens? 5 December 2019 Brussels, European Parliament www.emradi.eu 1
Results and recommendations of the EMRaDi project Presentation of Caroline Glaude Christian Mutual Health Fund, EMRaDi lead partner 5.12.2019 - Brussels, European Parliament www.emradi.eu 2
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EMRaDi : Euregio Meuse-Rhine Rare Diseases From October 2016 to March 2020 Health mutuals/ health insurance funds University University hospitals Patient organisation 4
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• 40% of EU territory • 30% of EU population (150 million citizens) • 30% of EU GDP Source : COMMUNICATION FROM THE COMMISSION TO THE COUNCIL AND THE EUROPEAN PARLIAMENT Boosting growth and cohesion in EU Terrestrial border regions along internal EU28 and EFTA borders border regions {SWD(2017) 307 final}
Recommendation ❶ Holistic Care Organizing the care to take into account all the needs of RD patients Addressing the multidimensional needs of people with a rare disease and their carers Empowerment of people with a rare disease and their carers to live in the most fulfilling and autonomous manner as possible and fully enjoy their fundamental human rights EURORDIS Position paper: Achieving Holistic Person-Centred Care to Leave No One Behind https://innovcare.eu/social-services/rareresourcenet/ 7
Recommendation ❶ Holistic Care > Findings & observations EMRaDi literature review, qualitative analysis and Patient Sounding Board 1. Coordination of care 2. Practical, financial and legal aspects 3. Administration and information 4. Psychological and social support Important role of GPs and informal caregivers!
Recommendation ❶ Holistic Care > Findings & observations Integrated RD case management service • INNOVCare pilot project of case management, Romania + • Pilot scheme TCC Valais carried out by ProRaris, Switzerland https://innovcare.eu/what-we-do/ 9
Recommendation ❶ Holistic Care > EU level EU support to health care providers and health insurance funds to develop holistic care and care coordination services for RD patients. ➢ Recognition as services of general interest ➢ Supportive legislative frame for their actions ➢ More social and health policy in the European Semester 10
Recommendation ❶ Holistic Care > Cross-border level Potential pilot projects in the EMR • New “RD Case Managers” More support to RD patients Improved care coordination • Training and tools for general practitioners Raising awareness and faster diagnosis • Data-sharing between expertise centres 11
Recommendation ❷ Telemedicine Developing reimbursement of telemedicine for RD 12
Recommendation ❷ Telemedicine > findings & observations EMRaDi report on legal and financial situation of RD patients in the EMR Directive 2011/24/EU EU Regulation 883/2004 (Patients’ rights in cross -border healthcare) (Coordination of social security systems) High fees to be paid in advance Less administration and insecurity on the price Some care for RD patients not (yet) in the benefit BUT package or not (yet) standard reimbursement schemes (no reimbursement) Coupled with the barrier of the prior authorization Standard case without prior authorization but requirement. hospital care can be made subject to prior authorization Neither the Directive 2011/24/EU nor the Regulation 883/2004 offer the “perfect solution” for cross-border healthcare (CBHC) for RD patients. 13
Recommendation ❷ Telemedicine > findings & observations 24 European Reference Networks (ERNs) - Technology and infrastructure - No reimbursement of patients and experts - Patient cases in ERN vs. across border ERNs and cross-border telemedicine: 2 complementary solutions 14
> findings & observations Recommendation ❷ Telemedicine 1) As 8.000 rare diseases exist the listed groups indicate focal fields. This does not mean that for example all rare neurological diseases are treated at the respective hospital. 2) This field is partly covered through the other University hospitals too. 15
Recommendation ❷ Telemedicine > EU level Recommendation ❷ Telemedicine : EU level EU support for ➢ clear rules for reimbursing telemedicine in ERNs and in a cross-border context ➢ easy access to the best available expertise ➢ training of National Contact Points (NCPs) 16
> Cross-border level Recommendation ❷ Telemedicine Potential pilot projects in the EMR Reimbursed telemedicine for RDs in the EMR • Tele-expertise : RD Doctor-to-doctor consultation • Tele-consultation : RD Patient (& local doctor)-to-doctor consultation 17
Recommendation ❸ European solidarity Structuring the coordination and the solidarity for RD at EU level Creating a European agency and a European solidarity fund for RD 18
Recommendation ❸ European solidarity > findings & observations Sustainability of existing policies and initiatives on rare diseases Law and policy, Joint Actions, EU expertise and other initiatives European Platform on Rare Disease Registration 19
Recommendation ❸ European solidarity > findings & observations Solidarity at EU level Implementation of the European Pillar for Social Rights principles and social protection for people living with a rare disease 20
Recommendation ❸ European solidarity > EU agency > EU agency Create sustainable ecosystems on RD with the core value of European solidarity Triple A approach • Raising Awareness • Increasing Accessibility o EU solidarity Fund o Simplified and equal reimbursments • Advancing research on RD o Key role for ERNs, NCPs, Orphanet o EU data and interoperability o Patient registers for research 21
Recommendation ❸ European solidarity > EU agency > EU agency Next steps • Dialogue between civil society, Member States and stakeholders Cooperation with the Rare 2030 project on the future policy on • RD (presentation to the EU Parliament at the end of 2020) 22
What is rare is precious! 23
Save the date EMRaDi closure event 17 February 2020 www.emradi.eu 24
Contact details EMRaDi project Lead partner: Mutualité chrétienne Verviers – Eupen / Christliche Krankenkasse Verviers – Eupen Contact person : Caroline Glaude Project manager for cross-border and European projects Caroline.Glaude@mc.be – info@emradi.eu Tel +32 (0)87 30 51 95 |Mobile +32 (0) 498 70 15 68 25 Icons by Freepik, Kiranshastry, DinosoftLabs, photo3idea_studio, Shmashicons, mynamepong, itim2101, Eucalyp, Maxim Basinski from www.flaticon.com
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