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The European Kidney Health Alliance

The European Kidney Health Alliance. Working together to reduce the incidence and impact of kidney disease in Europe Prof Norbert Lameire , Chairman EKHA. What are the major problems in chronic kidney diseases in Europe?. Nr. of patients on Renal Replacement Therapy. ~565,000. 503,000.

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The European Kidney Health Alliance

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  1. The European Kidney Health Alliance Working together to reduce the incidence and impact of kidney disease in Europe Prof Norbert Lameire, Chairman EKHA

  2. What are the major problems in chronickidneydiseases in Europe? .

  3. Nr. of patients on Renal Replacement Therapy ~565,000 503,000 435,000 360,000 EKHA: World KidneyDay 284,000 Direct medical costs: ~21 billion Euro/yr Calculated for the EU-27 countries ERA-EDTA Registry

  4. Chronic Kidney Disease and life expectancy EKHA: World Kidney Day Gansevoort et al, Lancet (in press) Alberta Kidney Disease Network data N=949,119. Courtesy: Brenda Hemmelgarn

  5. Causes of death in CKD EKHA: World Kidney Day Kidney function Alberta Kidney Disease Network data Adjusted for age and gender N=949,119. Courtesy: Brenda Hemmelgarn Gansevoort et al, Lancet (in press)

  6. Health care costs for different chronicdiseases in Spain UK 47525 0.05% 1-2% UK data Sharif, Baboolal, PDI,2011; 31(S2):S58–S62 Arrieta et al, Nefrologia 2011;31(5):505-513

  7. How to prevent progression of CKD? Kidney function 60% Early intervention EKHA: World Kidney Day Late intervention Start dialysis 10% 0% 0 1 2 3 4 5 6 7 8 9 10 Follow-up (years)

  8. diet medication Interventions to improve prognosis? Can progression of CKD be prevented? Strict blood pressure control Lowering of urinary protein loss (RAASi) Strict diabetes regulation Stop smoking Fight obesity Use healthy food medication diet EKHA: World Kidney Day Can cardiovascular disease in CKD be prevented? Strict blood pressure control Strict diabetes regulation Lowering cholesterol Stop smoking Fight obesity Use healthy food

  9. Food and CKD EKHA: World Kidney Day

  10. Patient awareness of early CKD is low More than 30% function Less than 30% function Fatigue Itching Nausea Loss of appetite Weight loss no symptoms symptoms EKHA: World Kidney Day Less than 10% function life threatening

  11. Kidney transplantation: facts and rationale • In the EU: 250 000 patients on dialysis • 60 000 on renal transplant WL • 18 000 transplants/y • Costs: • Hemodialysis: 40 K€ /y • Peritoneal dialysis: 15-25 K€ /y • Transplantation (LD/DD): • 1st y: 50 K€ /y • beyond 2nd y: 12 K€ /y GP • In the EU: 250 000 patients on dialysis • 60 000 on renal transplant WL • 18 000 transplants/y HD No tt • Kidney transplantation improvesboth the quality and QoL • Is cost-effective

  12. Dynamics of the Eurotransplantkidney transplant waiting list between 1969-2012

  13. EU Action Plan onOrganDonation and Transplantation (2009-2015) –The ACTOR study

  14. Full members Who are we? Alliance of non-profit organisations representing the key stakeholders in kidney health in Europe Associate members

  15. What do we aim to achieve? • Raise awareness of the importance of kidney health and the growing prevalence and societal burden of CKD • Influence strategies for early detection and prevention • Promote harmonized standards of care throughout Europe • Influence future EU research priorities and secure funding for innovation in care • Cooperatewith other key stakeholders in the chronic disease arena • Facilitate exchange of information and provide expertise tothe EU policy makers

  16. What this means to EDTNA/ERCA EKHA members are seen as the driver for kidney health in Europe Amplify nephrology’s voice in the health policy debate • Create opportunities for nephrology community to engagein the EU public health debate • Position the importance of kidney healthin chronic disease prevention • StrengthenEKHA’s reputation as a key partner in EU Health policy making • Increase the recognitionof the burden of CKD and advocatefor: • A European Strategy on Chronic Disease which includes CKD • National plans to improve kidney health • Policies for prevention (primary & secondary), • Policies for screening /early diagnosis • Increased funding for research

  17. at level European Commission Lobbying activities at level European Parliament

  18. Meetings with the European CommissionDG Sanco (Health for Growth) • Objectives of the meeting: • EKHA met in June with officials from DG Sanco to promote the inclusion of kidney disease in Calls for Proposals under Health for Growth (3rd Public Health Programme of the EU). Specific objectives were: • To enquire about the latest state of play regarding the decision on the programme and to understand any major differences compared to the previous programme • To find out whether the Commission has already begun to prepare the Work Plan for 2014 and what the topics for calls could be • To position CKD as major chronic disease, by making the correlation with CVD and diabetes, and suggest consideration of CKD as priority area for public health research under the Annual Work Plan in 2014 or next years • Outcomes: • EKHA has been invited to propose topics addressing kidney disease for consideration under upcoming calls for proposals • Research topics have been prepared by EKHA members and submitted to the responsible officials in DG Sanco.

  19. Public health research topics proposed by EKHA for Annual Work Plan 2014 Health for Growth Programme • Production of European guidance for advancement of patient care and the sharing of best practice: • a) Management of diabetes in patients with chronic kidney disease (CKD) • b) Management of chronic kidney disease in the elderly • c) Management of renal orphan diseases 2. Guidelines for dialysis care based on a combination of Registry data and a cull of other best-practice programmes across Europe (EU DOPSS)

  20. Enlisting the support of policy makers • MEP Group for Kidney Health • Chaired by Ms Zofija MazejKukovič (Slovenia) • Objectives of the MEP Group • Act as a hubfor the exchange of experience, • information and data on kidney health • Drive the development & implementation of targeted EU policies • Address specific EU and national policies which have an impact on the lives of kidney patients and their carers

  21. Title: The Effect of Differing CKD Treatment Modalities • andTransplantation Practices on Health Expenditure and Patient Outcome • Objectives: • to compare, from a macro-economic perspective, the various treatment modalities for CKD in European Member States, by investigating the factors that influence the treatment choice (by patient or doctor), and the impact of the choice on healthcare budgets. • to answer the question “Why is there such an enormous variability in practice in the overall management of CKD in Europe and how could these practices be harmonised in order to ensure equal and better quality of care while reducing costs?” • Expected outcomes: • help harmonising treatments for end stage kidney disease • improve the availability of transplantation across Member states Pilot Project Proposal Vote in the European Parliament scheduled in September. If successful, the Commission will implement the pilot project through a call for proposals in Spring 2014. Requested budget – 2 mil. Euro for 2 years

  22. MEP Twinning ProgrammeEngaging MEPs in EKHA goals via national activity Goal: Improve the national dissemination of European progress in kidney health promotion - strengthen the link between European and national health policy and to leverage the influence of European policy and guidance locally How: Twinning Programme would essentially consist of a connection between an MEP and the national nephrology society, and/or the national kidney foundation in his or her country. Why should MEPs be interested: A way for MEPs to make a connection to their national health landscape - connecting with national stakeholders will help to make a difference locally (*interesting given elections next year year). For national societies, EKHA’s programme gives them direct link to EU policy

  23. European Chronic Disease Alliance • European Parliament Resolution on NCDs • Stakeholder Consultation on NCDs in the EU • EU Council Conclusions on Chronic Diseases • Joint Action at National level on Chronic Diseases Working in Partnership to Call foran EU Strategy on Chronic Disease

  24. The Strength of a United Voice

  25. Thank you!

  26. Promising outcome data on effect of frequency on survival 415 pat on short daily dialysis matched with USRDS patients (NDT 2008) 45-64 yrs 29-44 yrs 94 pat on frequent nocturnal HD, matched w. 940 HD patients in USRDS (KI 2009) 177 pat on frequent nocturnal HD, matched w. Tx patients in USRDS (NDT 2009)

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