On May 30, alongside the 77th World Health Assembly in Geneva, the Global Patient Alliance for Kidney Health convened its first ever Chronic Kidney Disease Patient Forum. The event program underscored the benefits of screening and early detection and elevating chronic kidney disease as a priority NCD.
Over 800 million people are living with CKD worldwide. Yet fewer than 10% of people with CKD are aware of their disease which, without intervention, can lead to dialysis, kidney transplant or death.
The forum put into sharp focus the lived experiences of the CKD patient community and highlighted ways to center them in the design of early detection and interventions to improve kidney health outcomes. As addressing CKD requires a multisectoral approach, the program was enriched by clinicians, policymakers, and civil society organizations who attended to hear the patient perspective and share their knowledge and experiences.
Panel discussion
The event’s highlight was a patient panel moderated by Navdeep Tangri, MD, a nephrologist who serves as chair of GloPAKH’s Medical Advisory Council. Dr. Tangri spoke with CKD patients John Gikonyo from the Renal Patients Society of Kenya, Eugenia Petrinou from the Greek Federation of Kidney Patients and Douwe Hooijenga from the Association of Kidney Patients Netherlands. As patient advocates, each shared personal stories of their journeys while emphasizing the need for countries to prioritize screening and early treatment.
Keynote speakers
The program also featured guest speakers who contributed invaluable insights to the discussion.
Guy Fones, MD, head of Global Coordination Mechanism on NCDs at WHO talked about ongoing strategies and initiatives in combating CKD among other NCDs, focusing on meaningful engagement of patients with lived experience.
Penilla Gunther, former member of the Swedish Parliament, sat for an interview to discuss strategies the kidney health stakeholders can use to secure a seat at the policymaking table and push for early detection and treatment.
Katie Dain, CEO of NCD Alliance, noted the current window of opportunity to advance access to screening in the context of the 2025 planned UN High-Level Meeting on noncommunicable diseases. Advocates engaging with global and national policymakers in the run-up to that meeting can highlight the burden of CKD and the benefits of screening and early detection.
Professor Paul Kelly, chief medical officer for the Australian Government, presented lessons from Australia addressing CKD and other NCDs, reflecting specifically on the experience of First Nations people. He noted his office has constructive relationships with Kidney Health Australia and how such a collaborative relationship benefits patients and policymakers.
Somalia’s Minister of Health Doctor Ali Haji Adam Abubakar reflected on the state of NCDs in his country, explaining the burden of NCDs and CKD and highlighting gaps within the health care system to provide screening and treatment services. He expressed his support for prioritizing prevention and screening to alleviate pressure on overburdened health care systems, especially in settings battling humanitarian crises.
Open Letter to WHA Delegates
In conjunction with the forum, GloPAKH issued an open letter to the delegates of the World Health Assembly urging them to treat chronic kidney disease as a public health priority. The letter specifically calls for policymakers to:
- Increase education and awareness about CKD, most importantly among primary care physicians
- Implement targeted screening for at-risk individuals
- Integrate CKD management strategies into those of other NCDs
- Adapt well-respected, evidence-based international guidelines for national use
- Enable access to care and recommended treatments
A forum highlight video is available here.