european kidney health alliance · the mep group for kidney health is the informal group of members...

European Kidney Health Alliance Working together to influence EU policy

Raymond Vanholder, Chairman EKHA

AIM

• To defend the case of the kidney patients and the nephrological community at the European Union and the European national level

EKHA Membership

Full Members - founding members of the Alliance:

• ERA-EDTA: European Renal Association – European Dialysis and Transplant

Association

• EKPF: European Kidney Patients’ Federation

• EDTNA/ERCA: European Dialysis & Transplant Nurses Association/European Renal

Care Association

• DKF: Dutch Kidney Foundation

EKHA’s Broader Membership

Associate Members - European national and other non-profit kidney organisations:

1. Austria: Austrian Society of Nephrology

2. Bosnia: Society of Nephrology, Dialysis and

Transplantation of Bosnia & Herzegovina

3. Estonia: Estonia Society of Nephrology

4. France: French Speaking Society of Dialysis

5. Germany: German Society of Nephrology

6. Georgia: Georgian Union of Dialysis,

Nephrology and Transplantation

7. Netherlands: Dutch Kidney Patient Association

8. Portugal: Portuguese Society of Nephrology

9. Poland: Polish Kidney Association

10. Russia: Russian Dialysis Society

11. Slovenia: Slovenian Society of Nephrology

12. Spain: Sociedad Española de Diálisis y Trasplante

13. Spain: Spanish Dialysis Foundation

14. Spain: Spanish Society of Nephrology

15. United Kingdom: The Renal Association, UK

How does EKHA work?

EKHA’s Leadership

The activities of EKHA are conducted under the responsibility of a Management Committee, composed of two

representatives from each full member organization and a designated chairman.

• EKHA CHAIRMAN: Raymond Vanholder (Belgium)

• PAST CHAIRMAN: Nobert Lameire (Belgium)

• EKPF:Coert van Ee (the Netherlands), Lars Skar (Norway)

• EDTNA/ERCA: Edita Noruisiene, (Lithuania), Alois Gorke (Germany)

• ERA-EDTA: Carmine Zoccali (Italy), Monica Fontana (Italy)

• IFKF: Tom Oostrom (The Netherlands), Martijn Ubbink (The Netherlands)

What do we aim to achieve?

• Raise awareness of the importance of kidney health and the growing prevalence and societal

burden of CKD in Europe




• Influence EU strategies for early detection and prevention which can be implemented at

national level





national level

• Promote harmonised standards of care

throughout Europe





national level


throughout Europe

• Influence future EU research priorities

and secure funding for innovation in care





national level


throughout Europe



• Cooperate with other stakeholders in

the chronic disease arena





national level


throughout Europe





• Provide expertise to the EU policy makers

Page

EKHA actions to raise awareness of the growing burden of CKD in Europe

EKHA Recommendations for Sustainable Kidney Care


• Participate as a partner in European research projects for:

– Dissemination trough member network

• Social media platforms

• Email communications

• EKHA Newsletter

• Weblink posts

• Infographics


What?

• A collaborative effort drawing on the patient’s experience

and expertise as well as professional knowledge to

address entrenched problems with the planning and

delivery of RRT services in Europe

• A Call to Action, to EU and national-level decision-makers

to implement more efficient prevention and treatment

protocols to help reduce the predicted rising tide of new

cases of kidney failure needing costly and invasive RRT in

years to come

EKHA Recommendations for Sustainable Care

Recommendation # 1: Prevention and early detection



Recommendation # 2: Patient’s choice of treatment




Recommendation # 3: Increasing access to transplantation




Recommendation # 3: Increasing access to transplantation

Recommendation # 4: Treatment reimbursement strategies

How does EKHA make sure its

Recommendations reach its

audiences?

Annual EU Kidney Fora

DEBATE: Sustainable Kidney Care - Is it possible?

• The EU Kidney Forum is our annual event held each spring in Brussels

• 2015 highlight: Launch of EKHA’s Recommendations for Sustainable Kidney Care

• 2016-2019: Each year a part of the Recommendations is discussed

– 2016: Prevention & early detection

– 2017: Patient choice

– 2018: Transplantation



– 2021: Reimbursement

• Goal: Increase the recognition among EU decision-makers of the burden of CKD and advocate

for improved access to care and patient choice

• Gathers delegates from > 20 countries

• Delegates from European Parliament, European

Commission, World Health Organization,

National Ministries of Health Regulatory Bodies

Other recent EKHA activities

• ERA-EDTA Congresses, 2017 Madrid

• ERA-EDTA Congresses, 2018 Copenhagen‎

• EDTNA/ERCA Conference, 2017 Krakow

• ERA-EDTA Congresses, 2019 Budapest

• Review articles

• Position Papers

Page

MEP Group for Kidney Health

25

• Co-Chair: Hilde Vautmans (Belgium)

• Sirpa Pietikäinen, (Finland)

• Peter Liese, (Germany)

• Linda McAvan, (UK)

• Miroslav Mikolasik, (Slovakia)

• Aldo Patriciello, (Italy)

• Christel Schaldemose (DK)

• Annie Schreijer-Pierik (NL)

• Kay Swinburne (UK)

• Brando Benifei (Italy)

Current Members of the MEP Group for Kidney Health

• Chair: Hilde Vautmans (Belgium)

• Sirpa Pietikäinen, (Finland)

• Peter Liese, (Germany)

• Linda McAvan

• Mir

•

•

mose (DK)

• e Schreijer-Pierik (NL)

• Kay Swinburne (UK)

• Brando Benifei (Italy)

Current Members of the MEP Group for Kidney Health

Other areas where EKHA

works in partnership:

The chronic disease debate

Chronic diseases have an important health impact

1/3 of adult European population affected by CDs

1/4 of working-age population affected by CDs

86% of Europeans die of chronic disease

86%

14%

Major causes of mortality in the EU

Chronic diseases

Other

Vanholder et al, NRN Rev Nephrol, doi:10.1038/nrneph.2017.63

Most chronic diseases are related to each other

ECDA Activities 2017 –2018

Leader of the Thematic Network on the European Commission’s Health Policy Platform: Employment of People with Chronic Diseases

• Developed the Joint Statement on the Employment of People with CDs – collaboration across stakeholder groups

• Attended to DG Sante Cluster meeting on Chronic Diseases

• Official presentation at the EU Health Policy Platform Forum in November in presence of the European Commissioner for Health

• 20 March 2018: Presentation at final conference of the PATHWAYS project

• Informed European Parliament’s EMPL committee report on “Pathways for the reintegration of workers recovering from injury and illness into quality employment”

People with chronic diseases have lower employment rates

• For CVDs, cancer and diabetes, the employment rate is less than 30%.

Context – evidence, recommendations &

supportive frameworks

Educate employers on the issue of chronic diseases and working conditions, and promote chronic disease awareness at the workplace

“Chronic diseases have important labour market impacts for people living with these conditions: reduced employment, earlier retirement, and lower income”

Joint Statement was endorsed by over 40 organisations

Strength of a United Voice Shared goals = shared & amplified messages

European Chronic Disease Alliance

European Kidney Health

Alliance

European Kidney

Societies

National Kidney

Organisations

Page

EKHA actions to lead change in health policy

Prevention 2016

Most chronic diseases are related to each other

Vanholder et al, NRN Rev Nephrol, doi:10.1038/nrneph.2017.63

Regulatory actions can make a difference

HEALTH COST SAVINGS (MI AND CVA): 1.000.000.000 €/ 10.000.000 PEOPLE

Meier et al, Plos One, 10: e0135990; 2015

HEALTH COST SAVINGS WITH ADEQUATE DIET: SALT, SUGAR, FAT

Germany: Cost savings per year: 16.8 billion Eur / 80 million = 2.1 billion per 10 million per year

Patient Choice 2017

On patient choice and education: Results of an European

questionnaire in 9 European countries

Poland

Patients: 142

Professionals: 201

Portugal

Patients: 24

Professionals : 30

Netherlands

Patients : 95

Professionals : 50

France

Patients : 79

Professionals : 55

Spain

Patients : 164

Professionals : 120

Greece

Patients 137

Professionals 102

Lithuania

Patients 52

Professionals 28

Slovenia

Patients 16

Professionals 5

UK

Patients 94

Professionals 75

45

Snapshot of Patient Choice Survey Numbers of respondents per country

828 patients, 691 professionals

In the period before the start of RRT, do you think you received enough information about peritoneal dialysis?

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

FR UK NL SP GR SL LI

Perc

enta

ge o

f p

atie

nts

No

Yes

In your centre, is it a standard procedure to offer candidates for RRT information about peritoneal dialysis?

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

FR UK NL SP GR SL LI

Perc

enta

ge o

f p

rofe

ssio

nal

s

No

Yes

Transplantation 2018

Kidney transplantation in Europe

Kramer et al, CKJ, in press, doi: 10.1093/ckj/sfv151 DATA ERA-EDTA REGISTRY

EKHA’s ‘Gift of Life’ Campaign

Objectives: Coordinated approach to organ donation & transplantation at EU level appropriate legal, structural and cultural frameworks in EU member states to boost donation and transplantation

Call to Action: Equal access to kidney transplantation across the EU to all valid candidates Education programmes for healthcare professionals, patients and the general public to boost living donor kidney transplantation Establishment of appropriate legal and structural framework to facilitate transplantation Opting-out systems in EU member states to increase deceased organ donation Coordinated approach towards organ donation & transplantation at EU level

Thematic Network: Improving Organ Donation & Transplantation in the EU

ADDED VALUE OF TRANSPLANTATION

PROLONGS AND SAVES LIFES

IMPROVES QUALIY OF LIFE

DECREASES HEALTH CARE COST

STATUS 2015 CHANGE VS. 2014

Waitlisted patients 143,000 + 5%

Waitlisted patients dying/year 6,703 +7%

Waitlisted patients dying/day 18

EVOLUTION OF WAITING LIST IN EUROPE

https://www.coe.int/en/web/pristina/-/european-day-for-organ-donation-and-transplantation-2017


















i. Maximizing the role of TP coordinators

ii. Optimizing the role of the intensive care units

iii. Optimizing the procedure from donor identification to transplantation

iv. Education

v. Clustering of countries

vi. Opting in/out

vii. Promotion of expanded criteria donation

viii. Promotion of living donation

ix. Reducing financial barriers

x. International organ exchange

xi. Equity

xii. Long-term preservation of organ function

xiii. Benchmarking

JOINT STATEMENT – BODY TEXT

JOINT STATEMENT – POLICY CALLS AND RECOMMENDATIONS

A political declaration comprising calls and recommendations on the part of the European Commission, Member States and stakeholders, as part of a shared vision to improve organ donation and transplantation in the EU.

CALLS:

1. MOBILISE POLITICAL WILL TO MAKE ORGAN DONATION AND TRANSPLANTATION A PRIORITY

2. IMPROVE LEGAL AND INSTITUTIONAL FRAMEWORKS

3. STREAMLINE ORGANISATION AND INVEST IN LEADERSHIP AT ALL LEVELS

4. PROMOTE EDUCATION AND TRAINING AMONG ALL STAKEHOLDERS

5. BOOST BENCHMARKING

6. LEVERAGE RESEARCH

7. ERADICATE INEQUITIES IN ORGAN DONATION AND TRANSPLANTATION

8. ALLOCATE APPROPRIATE FUNDS FOR ORGAN DONATION AND TRANSPLANTATION PROGRAMMES

JOINT STATEMENT – TIMELINE

18 SEPTEMBER

Deadline for submitting

feedback and endorsement to

EKHA

3 OCTOBER

Final submission of Joint

Statement to the Commission

17 OCTOBER Presentation of

the Joint Statement to the Commission and Member States

OCTOBER-NOVEMBER

Extended period for further

endorsement

JOINT STATEMENT – ENDORSE (by 18 September):

Your support of the Joint Statement will be officially recognised on the document with your name (if you are an individual) or your organisation and its logo

Mail your name, organisation name & logo, contact info to [email protected]

Logo requirements: a vector format file (which can be a .eps, .ai or .svg file), or a .jpg or .png, with a minimum size of 250x250px and 150 dpi

mailto:[email protected]

Page

EKHA actions to influence research priorities

58

Grant Agreement number: PP-1-2016

http://www.edith-project.eu

EU Pilot Project initiated by EKHA via EU Parliament EDITH - The Effect of Differing Kidney Disease Treatment Modalities and Organ Donation

and Transplantation Practices on Health Expenditure and Patient Outcomes

Objectives

To compare, from a macro-economic perspective, the various treatment modalities for CKD in EU countries, by

investigating factors that influence treatment choice, and the impact on healthcare budgets

To facilitate the setting up of EU-wide registries for the follow-up of transplant recipients and living donors

1 Million EUR in co-funding

Kicked off in 2017, will run over three years until end 2019 and will be structured around 6 WPs

• WP 1 Coordination • WP 4 Assessment of different treatment modalities for CKD

• WP 2 Dissemination • WP 5 Establishment of registries to follow-up living donors

• WP 3 Evaluation • WP 6 Establishment of follow-up registers for transplant recipients

ERA-EDTA Registry will lead WP 4 in partnership with the Italian National Transplant Service (CNT)

EKHA is a collaborating stakeholder to the project, as is the EKPF

EU Pilot Project - EDITH

EDITH Consortium partners

• Deutsche Stiftung Organtransplantation (DSO) DE (Coordinator)

• Hungarian National Blood Transfusion Service (OVSZ) HU

• Ministarstvo zdravlja Republike Hrvatske – Ministry of Health Republic of Croatia (MoHRC) HR

• Academisch Medisch Centrum (AMC) on behalf of European Renal Association – European Dialysis

and Transplant Association (ERA-EDTA) NL

• Istituto Superiore di Sanità - Centro Nazionale Trapianti (ISS-CNT) IT

• Nederlandse Transplantatie Stichting (NTS) NL

• Institut d’Investigacions Biomèdiques August Pi i Sunyer (IDIBAPS) ES

• EuroTransplant International Foundation (ET) NL

• National Health Service Blood and Transplant (NHSBT) UK

What we know:

• Budget increased to 100 Billion EUR

• Commission proposal for FP9 expected 7 June 2018

• Final adoption by Autumn 2020

• FP9 Kicks off on 1 January 2021

Key aspects of the discussions include:

• Central focus is on contributing to achieving the UN Sustainable Development Goals (SDGs)

• Structured around 3 pillars: Open Science, Global Challenges and Open Innovation

• Health falls under Global Challenges, and part of these activities will be implemented through Missions - the “Moonshot Projects”

“Moonshot” projects - the centrepiece of Horizon Europe (FP9):

• “Big research missions, or ‘moon shots’, should have a breakthrough or transformative potential for science, technology, industry or society”

EKHA will get behind a European Kidney Research Agenda

• Advocacy for inclusion of key research priorities for kidney in the coming 10 years

Horizon Europe: the 9th EU Framework Programme for Research

Conclusions

• EKHA is a multistakeholder NGO that defends the case of kidney patients and the nephrological community in Europe

Conclusions


• We strive for sustainable, high-quality kidney care for all

Conclusions



• We also work to achieve harmonised kidney care and patient information throughout Europe

Conclusions



• We also work to achieve harmonised kidney care and patient information throughout Europe

• EKHA has a strong network that extends beyond the kidney community and is well connected to help support research initiatives

JOINT STATEMENT – ENDORSE (by 18 September):

Your support of the Joint Statement will be officially recognised on the document with your name (if you are an individual) or your organisation and its logo

- Mail your name, organisation name & logo, contact info to [email protected]

- Submit endorsement: Provide your contact info now via the chat window of this webinar or mail the information to [email protected]

Logo requirements: a vector format file (which can be a .eps, .ai or .svg file), or a .jpg or .png, with a minimum size of 250x250px and 150 dpi



Back-ups

Strength of a United Voice Shared goals = shared & amplified messages

European Chronic Disease Alliance

European Kidney Health

Alliance

European Kidney

Societies

National Kidney

Organisations

Page

ADDED VALUE

-For the National Societies

- Fast and first rate information of what is happening at European level - Health Policy Landscape - EU Research Funding Instruments

- Supported participation in the European Kidney Forum - Direct involvement in our programmes to influence European and national policy level with regards to kidney disease

- In harmony with what happens at EU/EC level and in other associated member societies - Offering extra credibility and leverage at the national level

- Support for making contacts in the European Parliament/Commission -For EKHA

- Increased numbers = increased leverage at towards the EU Commisison - Increased representation = increased leverage with other chronic disease societies

Page

Join us! Consider Associate Membership of EKHA

[email protected] [email protected]







Parliamentary questions tabled

EU commitment to action on salt reduction (via MEP Kadenbach & ENVI)

EU commitment to action on organ donation (via MEP Vautmans)

MEP Group for Kidney Health

The MEP Group for Kidney Health is the informal group of Members of the European Parliament committed to helping improve the policy response to the growing burden of kidney disease in Europe. The principal aim of the MEP Group for Kidney Health is to provide political impetus to improve policy on prevention, as well as improved access to best-practice care for all EU citizens.

Main findings from multi-Country Survey • Amongst transplantation options, living donation is often discriminated

• Low patient awareness of possible options due to the lack of patients education

• Free choice is hampered by financial drivers and lack of trained staff

• The preferences of the patients and their families are often neglected

• The survey results were presented during the 2017 European Kidney Forum, and

further discussed at the ERA/EDTA 2017 Congress in Madrid during the meeting of the EDITH project.

• Findings will feed into the EDITH project work. Data will also be submitted to further analysis for eventual publication by the team of the ERA-EDTA Registry.





national level


throughout Europe





• Provide expertise to the EU policy makers

• Participate in as a network partner in European research projects


Fully endorsed by:

• American Society of Nephrology (ASN)

• International Society of Nephrology (ISN)

• Sociedad Latinoamericana de Nefrología

e Hipertensión (SLANH)

• Asian Pacific Society of Nephrology (APSN)

• Australia and New Zealand Society of Nephrology (ANZSN)

ECDA Activities continued, 2018

Multi-MEP Group event on Chronic Disease in European Parliament 16 May 2018

• Co-hosted by MEPs Karin Kadenbach (S&D, Austria), Daciana Sarbu (S&D, Romania), Sirpa Pietikäinen (EPP, Finland)

Launched EU Manifesto to call on the European Commission to recognise health as an objective in its own right in its next 2019-2024 workplan, with specific targets on chronic diseases, and to scale up related investment in prevention of CDs to achieve the UN Sustainable Development Goals (SDGs).

Contributing to EU advocacy related to the UN High-Level meeting on NCDs

Participating in EU Joint Action CHRODIS Plus Work Package 8 “Chronic diseases and employment”

Position papers : Salt reduction, Tobacco, Trans-Fats elimination, Alcohol use, Air Pollution


Recommendation # 2: Patient Choice of Treatment

EKHA supports a patient-centered care approach for patients and their families, and

promotes the development of shared decision-making between the medical sector

and patients.

Key asks:

1. Promotion of the exchange of best-practices between Member States in

multidisciplinary care models and multimodality treatment

2. Support to the training of healthcare professionals to enable them consider

patients care pathways in a holistic approach cross cutting care sectors

3. Incentives to develop personalized long-term care plans for patients and

their families

4. Expansion of patient access to home dialysis treatment options

Focus of the 2017 EU Kidney Forum

Patient choice of treatment, education


Recommendation # 1: Prevention & early detection

• Currently 97% of healthcare spending goes to treatment with a mere 3% going

to prevention.

Key asks:

1. Primary prevention across the population

2. Education to obtain health literacy

3. Early detection strategies targeting high-risk individuals

4. Secondary prevention - once CKD is detected, program of appropriate

therapeutic measures to slow or stop the disease progression.


Moving from Disease Care to Health Care –

A paradigm shift that focuses on Prevention

EKHA’s ‘Gift of Life’ Campaign

Objectives: Coordinated approach to organ donation & transplantation at EU level appropriate legal, structural and cultural frameworks in EU member states to boost donation and transplantation

Call to Action: Equal access to kidney transplantation across the EU to all valid candidates Education programmes for healthcare professionals, patients and the general public to boost living donor kidney transplantation Establishment of appropriate legal and structural framework to facilitate transplantation Opting-out systems in EU member states to increase deceased organ donation Coordinated approach towards organ donation & transplantation at EU level


Recommendation # 3: Increasing access to kidney transplantation

Kidney transplantation rates vary drastically between EU Member States. EKHA

believes access to kidney transplantation should be equally guaranteed to all

suitable candidates and promoting increased organ donation is fundamental component for change.

Key asks: • Formulation of coordinated EU actions on organ donation and transplantation to strengthen

efforts achieved • Support for a shift towards opt-out organ donation schemes in Member States to increase

availability of organs • Implementation of awareness and support programmes about living donation


Increasing access to kidney transplantation

in the EU

european kidney health alliance · the mep group for kidney health is the informal group of members...

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