The European Kidney Health Alliance

Role of EKHA in creating interest for research in

kidney diseases in Europe.Prof Norbert Lameire, Chairman EKHA

University Hospital, Gent

Belgium

What are the major problems in chronic kidney diseases in Europe? .

Nr. of patients on Renal Replacement TherapyNr. of patients on Renal Replacement Therapy

284,000

1995 2000 2005 2010 2015

360,000

435,000

503,000~565,000

ERA-EDTA Registry

EKH

A: W

orld

Kid

ney

Day

Direct medical costs: ~21 billion Euro/yr

Calculated for the EU-27 countries

40,9

19,9

36,9

18,8

23,9

12,4

15,3

7,212,1

5,6

0

5

10

15

20

25

30

35

40

45

30 35 40 45 50 55 60 65 70 75 80

Age (years)

Normal kidney function

60 - 45%

45 - 30%

30 - 15%

<15% or RRT

Life

exp

ecta

ncy

(in

year

s)

Chronic Kidney Disease and life expectancyChronic Kidney Disease and life expectancy

Gansevoort et al,Lancet (in press)

Alberta Kidney Disease Network dataN=949,119. Courtesy: Brenda Hemmelgarn

EKH

A: W

orld

Kid

ney

Day

27,5 32,9 41,1 48,858,0

34,6 28,125,9

24,4 7,5

37,9 39,0 33,0 26,8 34,5

0%10%20%30%40%50%60%70%80%90%

100%

Normal 60 - 45% 45 - 30% 30 - 15% <15% or RRT

Kidney function

OthersCancerCardiovascular

Causes of death in CKDCauses of death in CKDEK

HA:

Wor

ld K

idne

y D

ay

Gansevoort et al,Lancet (in press)

Alberta Kidney Disease Network dataAdjusted for age and genderN=949,119. Courtesy: Brenda Hemmelgarn

Kidney function

Health care costs for different chronic diseases in Spain

Arrieta et al, Nefrologia 2011;31(5):505-513

Health care costs for different chronic diseases in Spain

Arrieta et al, Nefrologia 2011;31(5):505-513

47525 0.05% 1-2%UK

UK data Sharif, Baboolal, PDI,2011; 31(S2):S58–S62

How to prevent progression of CKD?How to prevent progression of CKD?

Kidney function

0%

10%

Follow-up (years)

0 1 2 3 4 5 6 7 8 9 10

Late intervention

Early intervention

Start dialysis

60%

EKH

A: W

orld

Kid

ney

Day

Interventions to improve prognosis?Interventions to improve prognosis?EK

HA:

Wor

ld K

idne

y D

ay

Can progression of CKD be prevented?

Strict blood pressure controlLowering of urinary protein loss (RAASi)

Strict diabetes regulationStop smokingFight obesity

Use healthy food

Can cardiovascular disease in CKD be prevented?

medication diet

Strict blood pressure controlStrict diabetes regulation

Lowering cholesterolStop smokingFight obesity

Use healthy fooddiet

medication

Good news for “alcoholics” in the audience :

Alcohol prevention of (type 2) diabetes

moderate consumption of alcohol –less de novo diabetes vs tee-totaler :

nurses health study

Hoorn studyHu,New Engl J Med (2001) 345: 790

de Vegt, Diab Res Clin Pract (2002) 57: 53

Food and CKDFood and CKDEK

HA:

Wor

ld K

idne

y D

ay

Patient awareness of early CKD is lowPatient awareness of early CKD is lowEK

HA:

Wor

ld K

idne

y D

ay

More than 30% function

Less than 30% function

Less than 10% function

no symptoms

life threatening

symptoms

Fatigue

Itching

Nausea

Loss of appetite

Weight loss

Kidney transplantation: facts and rationale

In the EU: 250 000 patients on dialysis

60 000 on renal transplant WL

18 000 transplants/y

• 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

HD

GP

Kidney transplantation improves both the quality and QoL Is cost-effective

No tt

Dynamics of the Eurotransplant kidney transplant waiting list between 1969-2012

EU Action Plan on Organ Donation and Transplantation (2009-2015) –The ACTOR study

Who are we? Alliance of non-profit organisations representing the key stakeholders

in kidney health in EuropeFull members

Associate members

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

Cooperate with other key stakeholders in the chronic disease arena

Facilitate exchange of information and provide expertise to the EU

policy makers

What this means to EDTNA/ERCA

• Create opportunities for nephrology community to engage in the EU public health debate

• Position the importance of kidney health in chronic disease prevention

• Strengthen EKHA’s reputation as a key partner in EU Health policy making

• Increase the recognition of the burden of CKD and advocate for: 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

Amplify nephrology’s voice in the health policy debate

EKHA members are seen as the driver for kidney health in Europe

at level European Commission

Lobbying activities

at level European Parliament

Meetings with the European Commission

DG 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.

1. 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 elderlyc) 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)

Public health research topics proposed by EKHA for Annual Work Plan 2014

Health for Growth Programme

Chaired by Ms Zofija Mazej Kukovič (Slovenia)

Objectives of the MEP Group

• Act as a hub for 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

Enlisting the support of policy makers

MEP Group for Kidney Health

Pilot Project ProposalTitle: 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

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

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

European Chronic Disease AllianceWorking in Partnership to Call foran EU Strategy on Chronic Disease

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

ECDA

EKHA

ERA-EDTAEDTNA/ERCA

NATIONAL SOCIETIES

The Strength of a United Voice

“Healthy citizens are the greatest asset

any country can have.”

—Sir Winston Churchill

Thank you!