Rare diseases arent rare. How can European solidarity improve the - - PowerPoint PPT Presentation

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Rare diseases arent rare. How can European solidarity improve the - - PowerPoint PPT Presentation

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Rare diseases arent 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

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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

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Results and recommendations

  • f the EMRaDi project

Presentation of Caroline Glaude Christian Mutual Health Fund, EMRaDi lead partner

5.12.2019 - Brussels, European Parliament

www.emradi.eu

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Patient organisation Health mutuals/ health insurance funds University University hospitals

EMRaDi : Euregio Meuse-Rhine Rare Diseases

From October 2016 to March 2020

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  • 40% of EU territory
  • 30% of EU population

(150 million citizens)

  • 30% of EU GDP

Terrestrial border regions along internal EU28 and EFTA borders

Source : COMMUNICATION FROM THE COMMISSION TO THE COUNCIL AND THE EUROPEAN PARLIAMENT Boosting growth and cohesion in EU border regions {SWD(2017) 307 final}

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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/

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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

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Integrated RD case management service

https://innovcare.eu/what-we-do/

  • INNOVCare pilot project of

case management, Romania +

  • Pilot scheme TCC Valais

carried out by ProRaris, Switzerland

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Recommendation ❶ Holistic Care > Findings & observations

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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

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Recommendation ❶ Holistic Care > EU level

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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

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Recommendation ❶ Holistic Care > Cross-border level

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Recommendation ❷ Telemedicine Developing reimbursement of telemedicine for RD

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EMRaDi report on legal and financial situation of RD patients in the EMR

Neither the Directive 2011/24/EU nor the Regulation 883/2004 offer the “perfect solution” for cross-border healthcare (CBHC) for RD patients.

Directive 2011/24/EU

(Patients’ rights in cross-border healthcare)

EU Regulation 883/2004

(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 package or not (yet) standard reimbursement schemes (no reimbursement)

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Standard case without prior authorization but hospital care can be made subject to prior authorization Coupled with the barrier of the prior authorization requirement.

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Recommendation ❷ Telemedicine > findings & observations

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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

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Recommendation ❷ Telemedicine > findings & observations

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Recommendation ❷ Telemedicine

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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

  • ther University hospitals too.

> findings & observations

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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)

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Recommendation ❷ Telemedicine > EU level

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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

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> Cross-border level

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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

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European Platform

  • n Rare Disease

Registration

Sustainability of existing policies and initiatives on rare diseases Law and policy, Joint Actions, EU expertise and other initiatives Recommendation ❸ European solidarity > findings & observations

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Implementation of the European Pillar for Social Rights principles and social protection for people living with a rare disease Solidarity at EU level

Recommendation ❸ European solidarity > findings & observations

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Create sustainable ecosystems on RD with the core value of European solidarity

Triple A approach

  • Raising Awareness
  • Increasing Accessibility
  • EU solidarity Fund
  • Simplified and equal reimbursments
  • Advancing research on RD
  • Key role for ERNs, NCPs, Orphanet
  • EU data and interoperability
  • Patient registers for research

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Recommendation ❸ European solidarity > EU agency

> EU agency

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Recommendation ❸ European solidarity > EU agency

  • 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)

Next steps

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> EU agency

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What is rare is precious!

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Save the date

EMRaDi closure event

www.emradi.eu

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17 February 2020

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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

Icons by Freepik, Kiranshastry, DinosoftLabs, photo3idea_studio, Shmashicons, mynamepong, itim2101, Eucalyp, Maxim Basinski from www.flaticon.com

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