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European Kidney Health Alliance

EKHA

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 harmonised 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

Lobbying Activity

Meeting with Romana Jerković (Member of the European Parliament)

16 Oct 2025 · Kidney Health

Response to EU cardiovascular health plan

1 Sept 2025

ALBUMINURIA FOR EARLY CARDIOVASCULAR RISK DETECTION The European Kidney Health Alliance (EKHA), representing 100 million Europeans with kidney disease, calls for the systematic testing of urinary albumin (albuminuria) as a simple, non-invasive, cost-effective, and evidence-based method to detect major cardiovascular risk, particularly undiagnosed diabetes, hypertension, dyslipidemia and chronic kidney disease (CKD). CKD, often neglected in health policy, is a major public health threat, as recently acknowledged by the Kidney Health Resolution, adopted at the 78th World Health Assembly1. CKD impacts 13% of Europeans2, but ~80% are unaware of their diagnosis3. Mortality continues to rise, while CVD mortality is declining. By 2050, CKD is forecasted to become 5th leading cause of death worldwide and 3rd in Western Europe4. CKD is a major cardiovascular risk factor and must be fully integrated in cardiovascular health planning. At least 30% of people with cardiovascular disease (CVD) have CKD5, and vice versa6. Cardiovascular risk is doubled with early CKD and rises exponentially as CKD progresses7 reaching a several hundred-fold increase in the ~500,000 Europeans on dialysis8. Among people with diabetes, 20-30% develop CKD, 90% of whom die of CVD9. Also for CVD, CKD acts as a significant accelerator10 . The cardiovascular burden can thus not efficiently be addressed if CKD is ignored. CVD, CKD, diabetes and hypertension often remain asymptomatic until late, when therapies are less effective, necessitating frequent hospitalizations and complex, costly interventions. Specifically for kidney disease, dialysis, costing up to 80,000 per patient year11, is physically and psychologically exhausting12, with poor long-term outcomes, and in children, growth and development disruptions. Dialysis also creates a heavy environmental burden: each of the ~150 annual hemodialysis sessions consumes 500 L of water, produces 1 kg plastic waste and emits greenhouse gas equivalent to a 240 km car trip13, which in turn increases kidney and cardiovascular disease risk14,15. Early detection and timely therapy of CVD, hypertension, diabetes and CKD, are therefore essential. Albuminuria is an effective tool to facilitate this goal: normal levels are under 30 mg/g urinary creatinine, and higher values signal early vascular and/or kidney damage. Albuminuria is markedly more sensitive than the traditional marker of kidney dysfunction, serum creatinine, which increases only later in disease16. In addition, urine collection is less invasive than that of blood. In a Dutch general population study (>45y), systematic testing identified albuminuria in 4% of participants, in 64% of whom one or more CVD or CKD risk factors were newly detected17. Cost-effectiveness analyses support systematic albuminuria screening from the age of 45, if combined with effective treatment of the detected conditions18. Although recommended by international CVD, diabetes, and CKD guidelines19-22, albuminuria testing is still grossly underused in Europe23. EKHA strongly advocates for systematic albuminuria screening in adults above 45 and in younger individuals with risk factors (diabetes, hypertension, cardiovascular disease, obesity, smoking, family history of one or more risk factors, personal history of kidney or vascular damage, preeclampsia, low birth weight, or sub-Saharan African origin). This would reduce personal and societal costs, suffering, and social and regional health inequities linked with chronic diseases24. Screening must be accompanied by education campaigns, such as the European Renal Associations ABCDE: Albuminuria, Blood pressure, Cholesterol, Diabetes, eGFR (kidney function measure) initiative25,26. Those activities should target the general public and frontline health professionals - general practitioners, nurses, pharmacists, community workers and specialists confronted with early cardiovascular risks. (Reference list attached)
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Response to Establishment of an expert panel on orphan and paediatric devices

16 Jun 2025

Overcoming the shortage of specific dialysis material for children in Europe The European Kidney Health Alliance (EKHA) represents the European kidney community, including two leading pediatric kidney societies: the European Society for Paediatric Nephrology (ESPN) and the European Rare Kidney Disease Reference Network (ERKNet). As EKHA, we are highly concerned about the escalating shortage of child-appropriate dialysis machines, fluids and catheters essential for safe and effective pediatric treatment. This issue involves both the availability and labeling of dialysis devices and supplies, resulting in the necessity to use of material designed for adults on children. This occurs despite the existing knowledge and technology to produce safe, high-quality dialysis equipment for children. While the EU Medical Device Regulation aims to improve medical device safety, it has inadvertently introduced substantial costs and burdens for bringing or maintaining devices on the market. As a result, manufacturers are discontinuing the marketing of medical devices that are sold only in small numbers such as those for dialysed children even though they are essential for the survival of those affected. For children on dialysis, the lack of adequate equipment increases the complexity of management and causes longer and more frequent hospitalisations. In practice, these shortages include: - Lack of labelled dialysis machines for children At present, none of the currently available dialysis machines are labelled for children under 10 kg , forcing pediatric kidney caregivers to rely on off-label use of adult-sized dialysis machines, fluids and catheters. This creates considerable risks for this already highly vulnerable population, as adult devices are not designed and unsafe for small children. - Complications arising from the use of adult-size dialysis machines Use of inappropriately large (adult-size) dialysis tubes and filters in small children require blood transfusions at the start of dialysis sessions. These transfusions are needed to prevent dangerous drops in blood pressure (hypotensive shock), since the dialysis equipment requires more blood than a childs body can safely provide. Even when immediate hypotensive risks are addressed, these transfusions can lead to serious long-term complications such as the development of antibodies, which may postpone or jeopardize later transplantation. This can further reduce a young childs already limited lifespan by decades; however, this threat is easily preventable by using appropriately-sized material. - Waste of peritoneal dialysis (PD) fluid bags Similar problems have been signalled for peritoneal dialysis (PD), which is the preferred and often only possible dialysis strategy in very small children. Because child-sized PD fluid bags are not available, adult-sized 2 litre bags are often used even though a bag of only 60 - 100 ml would suffice for a small child. As a result, the remaining dialysate must be discarded, significantly increasing both economic costs and environmental waste. In May 2025, during the World Health Assembly, the WHO adopted two landmark resolutions calling for greater equity in access to all forms of kidney care including paediatric care, and for the recognition of the needs of individuals with rare conditions. Against this backdrop, as EKHA President, I urge the EU to address the serious shortage of life-saving dialysis for children. It is essential to establish a robust framework that fosters innovation and ensures the free availability of these vital medical devices for this extremely vulnerable population. I count on your support to fully recognize and support the needs of children with kidney disease. Yours sincerely, Raymond Vanholder (Prof Em) Ghent University, European Kidney Health alliance (EKHA) Belgium
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Response to EU Strategy on medical countermeasures

8 May 2025

The European Kidney Health Alliance (EKHA) welcomes the European Commissions initiative to develop Medical Countermeasures (MCMs) against Public Health Threats. EKHA strongly supports timely and equitable access to critical health services during emergencies, including for people living with noncommunicable diseases such as Chronic Kidney Disease (CKD). CKD patients, especially those undergoing dialysis or with kidney transplants, are among the most vulnerable in times of crisis. With > 200,000 Europeans on dialysis, this issue cannot be overlooked. Their survival depends on continuous, timely access to life-saving treatment. Pandemics, natural disasters, conflicts, and other humanitarian crises disrupt access to dialysis or transplant medications. We urge the Commission to explicitly integrate the needs of this high-risk population into the forthcoming MCM strategy. Dialysis especially needs electricity, water, and supplies, all of which are jeopardized in crises. Key recommendations from EKHA include: Integrate kidney care into all emergency preparedness and disaster plans: Dialysis and transplant services must be recognized as essential health services in EU and national emergency frameworks. Power outages, water shortages, blocked transportation and interruptions in the supply chain can quickly become life-threatening in CKD. In addition, crush injuries (up to 10% of hospitalized earthquake victims), dehydration, exposure to toxins and infections can lead to Acute Kidney Injury, often requiring immediate dialysis. Emergency preparedness must include kidney-specific strategies to prevent and manage kidney diseases. Include kidney care-specific supplies in EU and national MCM stockpiles: Essential medical supplies such as dialysate concentrates, dialyzers, tubings, and dialysis machines must be included in strategic stockpiles and supply chains. Medications that prevent CKD progression and preserve transplant functionincluding immunosuppressive medicationare critical to avoid treatment interruptions, kidney function deterioration or death. Ensure protection of displaced dialysis patients in emergencies: Displacement due to public health threatssuch as natural disasters or armed conflictscan critically endanger people on dialysis. Missing even one treatment may be life-threatening within days. It is essential to prioritize these patients in evacuation planning and allocate them equitably across available treatment centers. Register kidney disease status: support National/EU registries of people with kidney failure, treatment facilities and capacity. Real-time monitoring of dialysis needs and location and capacity of functioning units is critical to minimize fatal delays in access to dialysis and the burden to overstretched services in crisis-affected regions. Improve detection, coordination, and monitoring of MCM deployment: We support the Commissions proposals to: o Clearly define the scope and scale of public health threats and indications for intervention o Rely on authoritative sources for timely alerts (e.g. GDACS, IFRC, ReliefWeb) o Establish structured response frameworks, flowcharts, and algorithms to guide rapid action o Regularly assess evolving needs Include expert advice in need assessments o Monitor whether aid was received and effective, and conduct debriefings to improve future responses The COVID-19 pandemic, recent earthquakes, floods, power outages and ongoing wars have shown that kidney patients are among those most at risk of care disruption. EU preparedness and countermeasure strategies must reflect the urgency and vulnerability of kidney care delivery systems. We urge the European Commission to ensure that the specific needs of CKD patients are fully integrated into the new strategy. Strengthening the resilience of kidney care systems and explicitly protecting patients reliant on uninterrupted treatment is not only a public health necessity but a matter of human dignity and equity.
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Meeting with Michalis Hadjipantela (Member of the European Parliament)

12 Mar 2025 · Introductory Meeting

Meeting with Adam Jarubas (Member of the European Parliament, Committee chair)

21 Oct 2024 · Choroby nerek w politykach i programch UE - prace nad strategią chorób sercowo naczyniowych UE

Meeting with Stine Bosse (Member of the European Parliament, Committee chair)

9 Oct 2024 · European health policy

Meeting with Kateřina Konečná (Member of the European Parliament) and Standing Committee of European Doctors

24 Sept 2024 · Introduction of political priorities

Meeting with Vlad Vasile-Voiculescu (Member of the European Parliament) and Manufacture Française des Pneumatiques Michelin and Terumo Blood and Cell Technologies

18 Sept 2024 · Introductory Meeting

Meeting with Tomislav Sokol (Member of the European Parliament)

18 Sept 2024 · Health policy

Meeting with Nicolás González Casares (Member of the European Parliament)

17 Sept 2024 · Non-communicable diseases

Meeting with Catherine Amalric (Member of the European Parliament) and European Brain Council and

18 Mar 2024 · Renew Europe Workshop on Healthcare in Europe and the patient-centric approach

Response to Interim evaluation of the EU4Health Programme 2021-2027

9 Jan 2024

With the implementation of the Healthier Together Initiative, the European Commission has rightfully placed emphasis on non-communicable diseases, earning widespread commendation. However, the initiative's scope is confined to four specific disease categories (diabetes, cardiovascular, respiratory, and neurologic diseases), overlooking Chronic Kidney Disease (CKD). This omission neglects the substantial burden CKD imposes on health, quality of life, and the health and social economy. The European Kidney Health Alliance (EKHA https://ekha.eu) vehemently advocates for the inclusion of CKD as an additional focal point within Healthier Together, commensurate with its profound impact. Key points supporting this inclusion are as follows: Prevalence and Mortality: Globally, 850 million people, including one in seven (100 million) Europeans, suffer from CKD. CKD ranks as the 8th leading cause of death in high-income countries, with projections indicating it could become the 5th leading cause of death worldwide by 2040. Financial and Productivity Impact: CKD's economic toll in Europe is substantial, accounting for an annual healthcare cost of 140 million. This disease results in significant productivity losses, with unemployment rates reaching up to 75%, a burden expected to escalate. Quality of Life: Patients experience a diminished quality of life due to the symptoms, complications, and therapies associated with CKD, significantly affecting both family and social life. Environmental Impact: The environmental footprint of CKD, particularly with dialysis as the primary kidney replacement therapy, includes substantial water consumption, tons of plastic waste production, and constitutes up to half of healthcare-related greenhouse gas emissions. Cardiovascular Risk: CKD exacerbates cardiovascular risks, doubling from early stages and increasing up to tenfold. It acts as a disease accelerator for cardiovascular diseases and diabetes, necessitating a holistic approach to disease prevention. Inadequate Screening and Prevention: CKD screening and prevention efforts lack uniformity across Europe, contributing to delayed detection when reversibility is limited. Future Burden and Risk Factors: The burden of CKD is anticipated to surge due to aging, obesity, diabetes, environmental pollution, global warming, and infections. Despite the unparalleled burden on patients and society, CKD remains disproportionately under-addressed. Comprehensive measures should include: General Awareness: Increase awareness about the kidneys' role, the burden of kidney disease, and the importance of early detection. Screening and Prevention: Implement a systematic and harmonized transnational approach to CKD screening and prevention, with specific attention to at-risk children. Address social inequities favoring CKD. Therapy Development: Invest in therapy development to impede disease progression, focusing on rare kidney diseases and damage caused by fibrosis. Innovation and Policy Shifts: Promote innovation and policy shifts for kidney replacement therapies, emphasizing solutions for the environmental burden. Encourage innovative kidney replacement therapies, home dialysis, and improve kidney donation and transplantation. Emergency Preparedness: Elevate the status of kidney diseases as primary focus points in disaster scenarios such as earthquakes, armed conflicts, heatwaves, floods, and pandemics. To facilitate this comprehensive approach, it is imperative that CKD becomes a health and innovation priority for the European Union, receiving comparable attention and investment as other non-communicable diseases. Proportional efforts are crucial to prevent and combat CKD and mitigate its societal and economic consequences. The European Kidney Health Alliance urges the European Commission to recognize CKD's significance and integrate it into the broader framework of Healthier Together.
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Meeting with Juozas Olekas (Member of the European Parliament)

1 Feb 2023 · Kidney health