Report: EKHA World Kidney Day Event

European Parliament, Strasbourg

Tuesday, 10th March 2009

Chronic Kidney Disease and Hypertension - Twin challenges for 21st century Europe

Lunch seminar, Tuesday 10 th March 13:00

European Parliament, Strasbourg, Members’ Salon

World Kidney Day is an annual occasion to raise awareness of chronic kidney disease (CKD). The theme for WKD this year is ‘Keep the Pressure Down’ , with the aim of raising awareness of hypertension as both a risk factor and symptom of CKD. Further to the successful 2008 European Kidney Health Alliance symposium in the European Parliament, this year EKHA and WKD are joining forces to organise a lunch seminar to pursue critical advocacy campaigns on CKD and ensure that last year’s ‘wake-up call’ will be followed by concrete policy measures. It is estimated that 8% of European citizens are currently affected by some form of CKD and this number is expected to rise because it is linked to other modern epidemics such as high blood pressure, diabetes and cardiovascular disease. In the long term, CKD can lead to renal failure and the need for dialysis or a kidney transplant. Central to the current EU-level debate on organ donation and transplantation is the simple fact that demand for organs for transplantation far outweighs supply. There is an immediate need to increase organ donation, but equally important in the longer term is the need to reduce the number of people developing renal failure. Public health measures to identify early kidney dis ease are emerging as central to prevention efforts. During the seminar ‘Chronic kidney disease and hypertension – Twin challenges for 21 st century Europe’ , an eminent panel of speakers will highlight the cause and effect of Europe’s hypertension and cardiovascular epidemics and their inseparable link to CKD. Panelists will also present innovative European initiatives that are working towards improving the identification and management of kidney disease. The event will be hosted by MEP Mrs Frieda Brepoels (Belgium, EPP-ED), Rapporteur of the European Parliament’s proposed Directive on standards of quality and safety of human organs intended for transplantation.

Programme Welcome and introduction Professor Andrew Rees, Chairman of the European Kidney Health Alliance Statement of support for EKHA and WKD Frieda Brepoels MEP, EPP-ED Rapporteur of the Directive on standards of quality and safety of human organs intended for transplantation

Chronic Kidney Disease: Cause and effect of Europe’s hypertension and cardiovascular epidemics Carmine Zoccali, MD FASN, Institute of Biomedicine, Clinical Epidemiology and Physiopathology of Renal Diseases and Hypertension, Ospedali Riuniti, Reggio Calabria - Italy Public health strategies to address CKD and its associated diseases Tom Oostrom M.Sc., Vice President Dutch Kidney Foundation. Self-management of CKD Valerie Twomey, patient General discussion – ‘Round-table

The European Kidney Health Alliance The European Kidney Health Alliance (EKHA) is an Alliance of not-for-profit organisations who represent the key stakeholders in kidney health issues in Europe. EKHA takes a mutidisciplinary approach involving patients and their families, doctors and nurses, researchers and other healthcare professionals who work cooperatively for a European health environment in which there is a sustained decrease in kidney disease and its consequences. EKHA Member organisations are the following: CEAPIR (European Kidney Patients’ Federation) EDTNA/ERCA (European Dialysis and Transplant Nurses Association/European Renal Care Association) ERA-EDTA (European Renal Association - European Dialysis and Transplant Association) IFKF (International Federation of Kidney Foundations) World Kidney Day World Kidney Day (WKD) is a global health awareness campaign focusing on the importance of our kidneys and reducing the frequency and impact of kidney disease and its associated health problems worldwide. The campaign is celebrated every year on the second Thursday of March in more than 100 countries on 6 continents

Organisers

With the support of:

April 2009

MEP Group for Kidney Health

Chronic kidney disease and hypertension

Twin challenges for 21st

century Europe

On 10th

March, the MEP Group for Kidney Health met to

exchange views with renal experts, two days before

World Kidney Day which falls on the third Thursday of

March each year.

Participants at the third meeting of the MEP Group for Kidney Health

This meeting, the third since the Group’s inception on

World Kidney Day 2008, focused on the challenges for

Europe of chronic kidney disease and hypertension, and

the public health strategies that are needed to increase

early awareness, identification and treatment of CKD

and its associated diseases.

Although chronic kidney disease affects around 10% of

the population, there is very little awareness of the

disease and of the problems it causes. Hypertension is

an important cause of kidney damage, and conversely,

kidney disease can cause complications such as

hypertension and cardiovascular disease.

Mrs Frieda Brepoels, Chair of the MEP Group for Kidney

Health, introduced the seminar. She reported on recent

EU measures taken to address the problem, including

the allocation of FP7 funds for research into CKD

epidemiology and the acknowledgement of the

importance of prevention of the disease in order to

decrease the need for organ transplants. She stressed,

however, the need for further EU action:

“I strongly believe the

European Union can play

a significant role in

encouraging Member

States to take urgent

action to acknowledge

the size of the problem

of chronic kidney

disease and high blood

pressure and the other

diseases linked to them, and to develop effective

strategies to prevent the death and suffering they

cause. Progress can be made by exchanging best

practices between Member States and by improving

existing technologies to detect kidney disease so as to

assure that every European citizen has equal access to

high-quality health care.” (Frieda Brepoels, MEP)

Professor Andrew Rees, Chairman of the European

Kidney Health Alliance, explained that while early

stages of CKD are largely symptomless, the damage that

this disease can cause can be severe and may lead to

heart attacks, strokes, and progressive kidney failure.

Stressing the need to raise awareness of this ‘silent’

epidemic, Professor Rees added that a recent study of

286 individuals with cardiovascular disease showed that

73% of those being treated for hypertension were

ignorant of their risk of developing CKD.

Professor Carmine Zoccali, an expert in the clinical

epidemiology and physiopathology of renal diseases

and hypertension, went on to explain that the number

of people affected by CKD is likely to increase

significantly in the future due to the ageing world

population and consequent increasing prevalence of

hypertension and diabetes. There needs to be a focus

on public awareness and screening programmes as well

as programmes to educate both patients and

physicians. What is more, screening for the risk factors

of CKD will be fundamental in halting the CKD epidemic.

Tom Oostrom, Vice-President of the Dutch Kidney

Foundation, reported that European governments are

beginning to acknowledge the importance of

prevention for their healthcare systems but are yet to

be convinced of the economic benefits. Valerie Twomey

gave an insight into life with kidney disease, explaining

how two years of dialysis had implications on her

lifestyle, diet, body image, social life, work and finances.

After receiving a kidney transplant in 2006, Ms Twomey

expressed how freedom from dialysis has changed her

life dramatically. With no diet or fluid restrictions and

far more energy, she now participated in normal

everyday activities and is a keen tennis player, and, a

very determined advocate for awareness for organ

donation will represent Ireland at the World Transplant

Games in August 2009.

The lively roundtable discussion ensued between the

audience of 40 experts, MEPs and industry

representatives. John Bowis MEP stated that future EU

action to address the challenges of CKD and its associated

From left: Professor Carmine Zoccali, Frieda Brepoels MEP, Professor

Andres Rees, Mr Tom Oostrom

diseases, should include a Council Recommendation.

Participants supported this idea and agreed to work

together for this to become reality.

The next meeting of the MEP Group for Kidney Health is

set to take place in autumn 2009.

“EKHA takes a multidisciplinary approach involving patients and

their families, doctors and nurses, researchers and other

healthcare professionals who work cooperatively for a European

health environment in which there is a sustained decrease in

kidney disease and its consequences.

For more information on the MEP Group for Kidney Health please contact frieda.brepoels@europarl.europa.eu or tel: +32 (0) 228 45862

For more information on EKHA please see www.ekha.eu or contact Anna Rouillard at the EKHA Secretariat: anna.rouillard@ekha.eu or tel: +32

(0) 263 96230

MEP Group for Kidney Health

The MEP Group for Kidney Health was launched on 4th

March 2008. Below is a list of the meetings of the Group:

Chronic kidney disease – Europe’s Silent Epidemic. A Wake-up Call

4 March 2008

European Parliament, Brussels

The costs and policy implications of chronic kidney disease in Europe

8 October 2008

European Parliament, Brussels

Chronic kidney disease and hypertension: Twin challenges for 21st

– century Europe

10 March 2009

European Parliament, Strasbourg

Chair and members of the Group

Mrs Frieda Brepoels, Belgian Member of the EPP-ED (European People’s Party – European Democrats) and

Rapporteur for the Directive on quality and safety standards or organs for transplantation, is Chair of the Group.

The following MEPs are members of the MEP Group for Kidney Health:

� Adamos ADAMOU (Cyprus, GUE/NGL)

� Georgs ANDREJEVS (Latvia, ALDE)

� Liam AYLWARD(Ireland, UEN)

� Irena BELOHORSKA (Slovakia, non-attached)

� Giovanni BERLINGUER (Italy, EPP-ED)

� John BOWIS (UK, EPP-ED)

� Cristian BUSOI (Romania, ALDE)

� Alejandro CERCAS (Spain, PES)

� Magor Imre CSIBI (Romania, ALDE)

� Jolanta DICKUTE (Lithuania, ALDE)

� Avril DOYLE (Ireland, EPP-ED)

� Genowefa GRABOWSKA (Poland, PES)

� Peter LIESE (Germany, EPP-ED)

� Jules MAATEN (Netherlands, ALDE)

� Miroslav MIKOLASIK (Slovakia, EPP-ED)

� Ria OOMEN-RUIJTEN (Netherlands, EPP-ED)

� Aldo PATRICIELLO (Italy, EPP-ED)

� John PURVIS (UK, EPP-ED)

� Zuzana ROITHOVA (Czech Republic, EPP-ED)

� Kathy SINNOTT (Ireland, Independent)

� Dirk STERCKX (Belgium, ALDE)

� Antonios TRAKATELLIS (Greece, EPP-ED)

Media follow-up World Kidney Day: EKHA and WKD Lunch Seminar Event

European Parliament, Strasbourg

This section highlights interim media coverage results achieved following the EKHA and WKD Lunch Seminar Event held at the European Parliament, Strasbourg on the 10th March 2009 (see appendix 1). Professor Andrew Rees - Chairman of EKHA, Mrs Frieda Brepoels MEP, Tom Oostrom - Vice President Dutch Kidney Foundation, Prof. Carmine Zoccali - leading Italian Nephrologist and Valerie Twomey – CKD patient, took part in the event. Five members of the medical trade press from France, Spain, Italy and Belgium attended the event. EU parliament television channel EuroparlTV also attended. EKHA issued a press release on PRNewswire. The following interim report includes the first set of media coverage published to-date. Coverage will continue to be published in medical trade press over the course of the next month. Coverage Attained

Publication Date Country Type of media outlet

Headline

PRNewswire. Article also appeared in: • PresseEcho.de • Ad-hoc news.de • AOL Money and

Finance • Bolsamania • Global Investor • Immedia.it • Linux • International

Association of Journalists

• Sys-con Belgium • Wind press • Europa press • epp-ed.eu • politics.be • eumonitor.net • de.news.yahoo.c

om • media.netpr.pl • studenten.de • scottrade.com • newstin.com • finanznachrichten

.de • med-kolleg.de • presseportal.de

10.03.2009 Pan-European Various Chronic Kidney Disease and Hypertension: Twin Challenges for 21st Century Europe

Destination Santé 12.03.09 France Medical

trade press Maladies rénales : de sombres perspectives…”

APM International 12.03.09 France Newswire Les personnes atteintes de maladies cardiovasculaires méconnaissent leur risque renal

JIM.fr 12.03.09 France Medical trade press

Les hypertendus ne pretent pas attention au risqué d’être ereintes par leurs reins

Vivir Mejor 12.03.09 Spain Medical trade press

Nefrologia – Enfermedad renal cronica e hypertension: Doble reto para la Europa del siglo XXI

Impact-sante.fr 16.03.09 France Medical trade press

Les patients atteints de maladies cardiovasculaires ignorant leur risque rénal

TheHeart.org 18.03.09 France Medical Trade Press

Les nephrologues europeens demandent aux cardiologues plus d'attention pour le rein

Salute di Repubblica 26.03.09 Italy Consumer press

Reni in pericolo, e allarme in Europa

Press Coverage: Chronic Kidney Disease and Hypertension: Twin Chall enges for 21st Century 10 March 2009 PR Newswire Europe

- Meeting at European Parliament relays stark message and calls for action to support early identification and treatment of CKD, especially among patients at greatest risk

The European Kidney Health Alliance (EKHA) and World Kidney Day (WKD) organisations today call for action at EU level to support early awareness, identification and treatment of CKD and its associated diseases such as cardiovascular disease (CVD), hypertension (high blood pressure) and diabetes. The MEP Group for Kidney Health, launched on WKD last year, met at the European Parliament in Strasbourg today with an eminent panel of renal experts, politicians, and patient and kidney organisations. The meeting relayed the stark message that unchecked high blood pressure may severely damage the kidneys and is a major cause of CKD.

Speaking at the event, Professor Andrew Rees, Chairman of EKHA commented, "Although, chronic kidney disease affects at least 10% of the European population, there is very little awareness of the problems it causes. EKHA was formed to increase understanding of the challenges posed by CKD and to promote effective public health strategies to fight what has been called Europe's silent epidemic."

Greater efforts to prevent CKD and to detect its earliest stages are needed to slow the progression of kidney disease to kidney failure and to prevent the complications it causes, including hypertension and other cardiovascular diseases such as heart attacks and strokes.(1) Conversely hypertension is an important cause of CKD. To support this event and the WKD 2009 'Keep the pressure down' campaign, a pan-European survey, sponsored by an educational grant from Amgen, was conducted among 486 people treated for cardiovascular disease. Worryingly, the survey showed that three quarters of patients (73%) with CVD -- most of whom have high blood pressure -- were unaware of their increased risk of CKD. Only half (47%) of those surveyed had had their kidney function checked by their physician and, most worrying of all, over 80% of those surveyed had had no discussion with their physician about the steps they could take to look after their kidneys.

Commenting on the results Professor Carmine Zoccali from the Institute of Biomedicine, Clinical Epidemiology and Physiopathology of Renal Diseases and Hypertension, Hospital Riuniti, Italy, added, "These results are alarming, we need to act now to educate people with cardiovascular diseases such as high blood pressure to help minimise their risk of developing CKD. Simple measures and screening can help reduce the number of people needlessly suffering from CKD and its consequences which can severely impact on patients' health and quality of life."

In its most advanced stage CKD requires renal replacement therapy (RRT) with dialysis or transplantation. The current EU debate on organ donation and transplantation underlines the need to address the shortage of organs for transplantation. The European Parliament's official resolution on organ donation and transplantation recognises the importance not only of cooperation between Member States on addressing this shortage, but of the necessity for public health measures to facilitate the early detection and management of the chronic diseases such as CKD, and so prevent those affected from ever developing kidney failure. Preventative strategies are the only way to minimise the number of people needing organ transplants in the future.

Mrs. Frieda Brepoels MEP commented, "I strongly believe the European Union can play a significant role in encouraging Member States to take urgent action to acknowledge the size of the problem of chronic kidney disease and high blood pressure and the other diseases linked to them, and to develop effective strategies to prevent the death and suffering they cause. Progress can be made by exchanging best practices between Member States and by improving existing technologies to detect kidney disease so as to assure that every European citizen has equal access to high-quality health care."

The link between CKD and CVD works both ways: hypertension and other cardiovascular diseases cause CKD and CKD causes hypertension and greatly increases the risk of developing other types of cardiovascular disease. Indeed, people with CKD are more likely to die of CVD than to develop kidney failure.(2) Increasing awareness of kidney disease is the first and perhaps most important step towards preventing kidney failure. The EKHA calls on the EU to use its authoritative voice to support National Governments in developing public health programs that acknowledge the importance of preventing CKD.

The EKHA event at the European Parliament, Strasbourg is supported by Amgen and HemoCue.

Notes to editors:

About the EKHA

The European Kidney Health Alliance (EKHA) is an alliance of not-for-profit organisations that represent the key stakeholders in kidney health issues in Europe. EKHA member organisations are CEAPIR (European Kidney Patients' Federation), EDTNA/ERCA

(European Dialysis and Transplant Nurses Association/European Renal Care Association), ERA-EDTA (European Renal Association - European Dialysis and Transplant Association), IFKF (International Federation of Kidney Foundations). More information at www.ekha.eu

About World Kidney Day

World Kidney Day (WKD) is a global health awareness campaign focusing on the importance of our kidneys and reducing the frequency and impact of kidney disease and its associated health problems worldwide. The campaign is celebrated every year on the second Thursday of March in more than 100 countries on six continents.

About Amgen

Amgen discovers, develops, manufactures and delivers innovative human therapeutics. A biotechnology pioneer since 1980, Amgen was one of the first companies to realize the new science's promise by bringing safe and effective medicines from lab, to manufacturing plant, to patient. Amgen therapeutics have changed the practice of medicine, helping millions of people around the world in the fight against cancer, kidney disease, rheumatoid arthritis, and other serious illnesses. With a deep and broad pipeline of potential new medicines, Amgen remains committed to advancing science to dramatically improve people's lives. To learn more about our pioneering science and our vital medicines, visit www.amgen.com.

About HemoCue

HemoCue, a Quest Diagnostics company, is a leading global company in a field of diagnostics known as near patient, or point of care, testing. In 1982, HemoCue introduced the first system making accurate haemoglobin testing possible in near patient settings. The company also manufactures point of care tests for glucose and urine albumin. Quest Diagnostics acquired HemoCue in 2007. More information at www.hemocue.com.

About CKD and its Symptoms

Chronic Kidney Disease is the general name for persistent irreversible damage to the kidney. In its earliest stages, the kidneys may only have minor structural damage. Often such damage tends to progress if undetected and untreated. One of the signs of early CKD is the presence of small amounts of protein in the urine. More advanced CKD is characterised by progressively greater abnormalities in the chemical composition of the blood, anaemia - a cause of tiredness and shortness of breath - and bone abnormalities. The most advanced form of CKD occurs when the kidney has been nearly completely destroyed and treatment with dialysis or kidney transplantation is required for survival. Many individuals with CKD do not progress to kidney failure and treatment has the twin objectives of correcting the abnormalities resulting from the kidney damage and of preventing progression to more advanced stages.

Many factors contribute to the progression of CKD. The most common causes are diabetes, hypertension, and generalised atherosclerosis. Especially when these factors are associated with the loss of albumin in the urine, renal function will rapidly decline with end stage renal disease being the outcome. An ageing population coupled with the growing prevalence of obesity-related type 2 diabetes has increased the number of people with or at risk of CKD.

About the SurveyThe survey was conducted by research agency TNS, among 962 patients, across 5 European countries (France, Germany, UK, Italy and Spain). The sample comprised 227 patients with diabetes, 486 with CVD, and 233 with both conditions. 16 further patients had CKD in combination with diabetes and/or CVD. The survey was conducted to highlight the current gaps in knowledge among at-risk groups (CVD and diabetes patients) and the importance of public health strategies to address the urgent need for CKD recognition. The survey was conducted in February 2009.

(1) A. Levey, A. Schoolwerth, N. Burrows, D. Williams, K. Stith, W. McClellan, Comprehensive Public Health Strategies for Preventing the Development, Progression, and Complications of CKD: Report of an Expert Panel Convened by the Centers for Disease Control and Prevention, Am J Kidney Diseases, 2008 53: 3 522-535 (2) Shulman NB, Ford CE, Hall WD, et al. Prognostic value of serum creatinine and effect of treatment of hypertension on renal function: results from the hypertension detection and follow-up program. The Hypertension Detection and Follow-up Program Cooperative Group.Hypertension. 1989;13(5 suppl):I80-I93.

European Kidney Health Alliance Anna Rouillard of EKHA, +32-2-639-6230, anna.rouillard@ekha.eu; or Angela Guillemet of WKD, +353-863-11-40-67, info@worldkidneyday.org

Maladies rénales : de sombres perspectives… 12 March 2009 Destination Santé

Maladies rénales : de sombres perspectives…

[12 mars 2009 - 08:35] Destination Sante

C’est aujourd’hui la Journée mondiale du rein . Si cette dernière ne bénéficie pas de l’onction d e l’OMS, elle n’en est pas moins relayée dans plus de 100 pays. Il faut dire que les maladie s rénales n’épargnent aucune région. A l’échelle de l’Union européenne par exemple, elles frappent plus de 10% de la population.

Mardi dernier au Parlement de Strasbourg, l’European Kidney Health Alliance (EKHA) qui rassemble des professionnels et des associations de patients « a invité l’Union à passer à l’action ». Première étape : mettre en place des campagnes de sensibilisation.

« Les trois quart des patients atteints d’une maladie cardiovasculaire- la plupart avec une hypertension artérielle - ne savent pas qu’ils ont un risque accru de maladie rénale chronique », souligne le président de l’EKHA, Andrew Rees.

L’avenir n’est pas réjouissant. Alors que 40 millions d’Européens souffrent d’une maladie rénale, les spécialistes estiment que ce nombre devrait doubler avant 2017 ! D’où l’importance de sensibiliser le public, mais aussi les professionnels de santé, au dépistage de l’hypertension artérielle. Mal contrôlée, cette dernière peut en effet entraîner une maladie rénale. En France, la Journée mondiale du rein est relayée par la Fondation du Rein et la Fédération nationale d’aide aux insuffisants rénaux . Pour savoir davantage, sur le rôle des reins, cliquez ici .

Source : De notre envoyé spécial au Parlement européen, Strasbourg, 10 mars 2009 © 1996-2009 Destination Santé SAS - Tous droits réservés. Aucune des informations contenues dans ce serveur ne peut être reproduite ou rediffusée sans le consentement écrit et préalable de Destination Santé. Tout contrevenant s'expose aux sanctions prévues par les articles L 122-4 et L 335-3 du Code de la Propriété intellectuelle: jusqu'à deux ans d'emprisonnement et 150 000 euros d'amende.

Les personnes atteintes de maladies cardiovasculair es méconnaissent leur risque renal 12 March 2009 APM International

Les hypertendus ne pretent pas attention au risqué d’être ereintes par leurs reins 12 March 2009 JIM.fr

Nefrologia – Enfermedad renal cronica e hypertensio n: Doble reto para la Europa del siglo XXI 12 March 2009 Vivir Mejor

Les patients atteints de maladies cardiovasculaires ignorant leur risque renal 16 March 2009 Impact-sante.fr

Les nephrologues europeens demandent aux cardiologu es plus d'attention pour le rein 18 March 2009 TheHeart.org

Reni in pericolo, e allarme in Europa 26 March 2009 Salute di Repubblica

23 March 2009 EuroparlTV Focus: Prevention is the best solution for chronic kidney diseases See: http://www.europarltv.europa.eu/yourVoice.aspx?acti on=ViewVideo&PackageId=cbff3425-047b-4638-9a98-4663 d5f51673