ISN Advocacy Newsletter – Bridging the Gaps – March 2024
ISN’s Latest Advocacy Initiatives: Global Kidney Policy Forum at WCN’24, Share WKD Triumphs, Read The Lancet Global Health Publications & More
Welcome valued members and allies to Bridging the Gaps, the ISN’s quarterly update on how we advocate and collaborate with partners and those living with kidney disease to address this critical global health challenge.
The last few months have been highly productive for ISN global advocacy efforts with:
- The World Health Organization’s (WHO) Executive Board in January
- The launch of three toolkits as part of the ISN 2021-2023 collaboration plan with the WHO
- ISN participation in WHO’s “Global High-Level Technical Meeting on Noncommunicable Diseases in Humanitarian Settings”
- The publication of an ISN paper in The Lancet
- Patient Liaison Advisory Group (PLAG) involvement in developing patient-centric tools for cardiorenal care
- The annual World Kidney Day campaign, which culminated on March 14
At the WHO’s 154th Executive Board session, the ISN collaborated with the NCD Alliance, the World Heart Federation and other partners to urge member states to prioritize integrated noncommunicable disease (NCD) services during health emergencies, emphasized the need to increase engagement in preparatory processes for the 2025 NCD High-Level Meeting, and highlighted the importance of circulatory health services under universal health coverage.
In late February, the ISN played a crucial role at the “Global High-Level Technical Meeting on NCDs in Humanitarian Settings,” where our Renal Disaster Task Force Working Group hosted an official side event on dialysis. This event aimed to shed light on the challenges faced by dialysis-dependent individuals in humanitarian disasters and emphasized the urgency for a collaborative response. We are committed to strengthening policy considerations for kidney disease in emergency settings and overall NCD care in the lead-up to the UN High-Level Meeting on NCDs in 2025.
Our advocacy efforts continue with upcoming major international events. On April 15, 2024, we are set to host the ISN’s annual Professor Donal O’Donoghue, Global Kidney Policy Forum in Buenos Aires, Argentina, as part of the 2024 World Congress of Nephrology (WCN’24). This year’s forum will address the specific challenges and successes of kidney care in the Latin American region while renewing our commitment to implement the “10 Recommendations for Global Kidney Health.“
Finally, for the second consecutive year, our collaboration with Devex will culminate with a significant event scheduled in Geneva during the World Health Assembly on May 29, 2024. Through this event, we strive to raise kidney disease on the global health agenda and advocate for its prioritization in international and national health policies.
Your ongoing support is crucial for achieving these goals. Please get in touch with the ISN advocacy team to discuss how we can collaborate to help deliver a future where everybody has equitable access to sustainable kidney health.
Best regards,
Masaomi Nangaku
ISN President
The “Professor Donal O’Donoghue, Global Kidney Policy Forum: Focus on Latin America” (PDOGKPF) will be held on April 15 from 3-5.40 p.m. local time at the World Congress of Nephrology 2024.
The meeting brings together decision-makers and stakeholders, including WHO representatives, Ministers of health, people living with kidney disease, and internationally renowned nephrologists.
Discover more about the Professor Donal O’Donoghue, Global Kidney Policy Forum here.
Speakers will review the burden of kidney disease in the ISN Latin America region and share strategies for preventing and improving kidney care at regional and global levels.
Highlights will include:
- Mario Russo on the Argentinian Ministry of Health perspective
- Anselm Hennis on the Pan American Health Organization/World Health Organization work on noncommunicable and kidney diseases
- Ramon Garcia Trabanino on chronic kidney disease (CKD) of unknown origin
- Marianella Sierra Canales on the patient perspective
- Maria Eugenia Victoria Bianchi on Argentinian First Nations and CKD
- María Carlota González Bedat on the Latin American Dialysis and Renal Transplantation Registry
- Guillermo Rosa Diez on dialysis without a diagnosis
The ISN invites all WCN’24 delegates to attend the Professor Donal O’Donoghue, Global Kidney Policy Forum in person in Buenos Aires, Argentina, to renew their commitment to the 10 Recommendations for Global Kidney Health.
The ISN thanks the Argentinian Society of Nephrology and the Latin American Society of Nephrology and Hypertension for collaborating to organize and hold this significant event to advance kidney health globally.
With over 850 million people globally affected by kidney disease, the ISN’s participation at the latest World Health Organization (WHO) Executive Board 154th Session (EB154, January 22-29, 2024) was crucial for ISN advocacy efforts in the global health arena.
At the meeting, the ISN highlighted the vulnerability of individuals with noncommunicable diseases (NCDs) during health emergencies. Collaborating with the NCD Alliance and partners, the joint statement emphasized the need for the WHO to prioritize integrated NCD services and enhance people-centered primary care. Find details of these advocacy efforts here.
Our commitment extended to addressing NCDs and mental health concerns. Joint statements with the NCD Alliance and other partners urged policy coherence, additional resources, and increased commitment. Member States were encouraged to actively prepare for the 2025 NCD high-level meeting and support the NCD Global monitoring framework update. The comprehensive statement is available here.
In addition, alongside partners from the Global Coalition for Circulatory Health (GCCH), such as the World Heart Federation, the ISN highlighted the importance of prioritizing circulatory health services under universal health coverage. Our joint statement recommended essential screenings and affordable treatments and encouraged decision-makers to expand coverage by 2030, prioritize primary care, and integrate evidence-based interventions. Explore the statement in detail here.
The WHO Executive Board announced its decision to maintain the ISN in official relations for another three years. The executive board commended the ISN’s ongoing dedication to the WHO’s work. A work plan underpins the “official relations” status. This foundational document guides collaborative efforts between the two entities, ensuring transparency, accountability, and an effective contribution to global health priorities. The work plan includes various deliverables that are accessible here.
As we reflect on the discussions and collaborative efforts at the EB154, the ISN remains committed to elevating kidney health in the global health agenda.
As part of World Health Organization (WHO) -ISN 2021-2023 Collaboration Plan deliverables, the ISN has released three groundbreaking toolkits to empower professionals and policymakers to combat global kidney diseases.
Acute Kidney Injury (AKI) Toolkit
Aligned with the key strategies of the ISN 0by25 Initiative, this toolkit covers:
- AKI detection
- AKI management
- AKI prevention
- Essential information on the creation of adaptable workflows for various clinical settings, including those with limited resources
Discover the AKI Toolkit here.
Dialysis Toolkit
This toolkit complements the ISN Framework for Developing Dialysis Programs in Low-Resource Settings and incorporates the patient perspective. It covers various aspects of kidney failure care, including:
- Modalities
- Provider models
- Conservative care
- Person-centered plans
- Ethical considerations
Discover more on the Dialysis Toolkit here.
Sharing Expertise to Support the Set-up of Renal Registries (SharE-RR) Toolkit:
Designed for nephrologists and public health officials, the SharE-RR Toolkit outlines strategies for establishing and maintaining renal registries in high-, middle- and low-income countries. It covers:
- Feasibility
- Establishing a team
- Defining scope
- Data set and elements
- Data sources and management
- Information systems
- Legal, ethical, privacy and security issues
- Governance
- Delivery
Discover more on the SharE-RR Toolkit here.
Explore other ISN Tookits here.
The ISN extends its deepest gratitude to all the experts for their exceptional contributions to these toolkits. ISN members: Your continuous support makes the development of such tools possible!
Strategies for Establishing and Maintaining Renal Registries: Maria Pippias on the SharE-RR Toolkit
By Maria Pippias, co-chair of the SharE-RR Advisory Group
The ISN Sharing Expertise to Support the Set-up of Renal Registries (SharE-RR) Toolkit is now available.
More than 850 million people worldwide are estimated to be living with kidney disease, the burden of which is distributed unevenly, disproportionately affecting people in low- and middle-income countries.
Renal registries increase awareness of this burden and advocate for resources to prevent and treat kidney disease. While well-established in many high-income countries, renal registries are infrequently found in low- and middle-income countries.
Designed for kidney health professionals and public health officials, the SharE-RR Toolkit provides a high-level overview of strategies for establishing and maintaining renal registries in high-, middle- and low-income countries. The toolkit offers general guidance but can be adapted to suit those wishing to set up a chronic kidney disease, acute kidney injury, or other specific renal disease registry, as well as more traditional dialysis or transplant registries.
It contains an interactive, searchable map to identify renal registries worldwide and their available expertise. A repository of recorded talks, methodological papers, and templates will be available shortly.
Join us on April 13 at the WCN 2024:
- SharE-RR Toolkit launch Spotlight Session, 6.45 p.m. (Buenos Aires time).
- SharE-RR Session: The Global Situation and Inspiration From Established Registries in Latin America, 1-4.05 p.m. (Buenos Aires time).
The ISN joins World Kidney Day (WKD) organizers in thanking all who supported WKD activities this year to raise awareness about the importance of ensuring equitable access to treatment and care for people living with kidney disease.
The 2024 campaign owes its achievements to your consistent dedication throughout the year, alongside the tireless efforts of healthcare professionals, patients, supporters, and the general community, all collaborating to achieve the remarkable success of this edition.
Share your WKD 2024 experiences with us and be featured on the WKD website and social media platforms!
- Upload your photos on the WKD website and visit the WKD 2024 gallery
- Fill in the activity report form, which will appear on the WKD impact report page. Innovative and impactful activities described in reports will be added as “best ideas“
- Use #WorldKidneyDay and tag @WorldKidneyDay on Facebook, LinkedIn, Instagram, Twitter, TikTok, and Youtube in posts about your activity and they will be shared on WKD channels
The ISN thanks the official WKD 2024 supporters: Astellas, AstraZeneca, Baxter, Bayer, Boehringer Ingelheim & Lilly, CSL Vifor, DaVita, Diaverum, Fresenius Kabi, Fresenius Medical Care, Novartis, Novo Nordisk, Otsuka Visterra, Sanofi, Travere Therapeutics, Vera Therapeutics and Vertex Pharmaceuticals.
In partnership with Devex, the ISN will host a stand-alone event in Geneva for the second time on May 29, 2024, from 9-10 a.m. CEST, coinciding with the 77th World Health Assembly (WHA).
This event aims to raise the profile of kidney disease as a global health priority and make a case for why it can no longer be ignored. With more than five million people dying each year due to a lack of access to kidney care, policymakers must recognize the importance of kidney disease as a global safety concern.
A panel of high-level speakers will explore holistic approaches to chronic kidney diseases (CKD), advocating for the worldwide adoption of tools and medication to ensure universal kidney health. Early diagnosis and treatment will take center stage as we discuss a comprehensive, whole-person care strategy to reshape the landscape of noncommunicable diseases.
In particular, the event will examine the impact of CKD in low- and middle-income countries, where timely detection and treatment are often lacking, resulting in significant missed opportunities for prevention and intervention. The conversation will highlight the challenges of people living with kidney diseases in these regions, including barriers to accessing new lifesaving treatments, lack of awareness and diagnosis at the primary care level, and the persistently high costs associated with long-term treatment.
Be part of this pivotal conversation as we break down barriers to treatment, enhance CKD awareness, and strengthen healthcare workforce capabilities.
This event is supported by AstraZeneca and Novartis.
In February 2024, the ISN participated in the Global High-Level Technical Meeting on Noncommunicable Diseases (GHLTM-NCDs) in Humanitarian Settings in Copenhagen, Denmark. As a non-state actor in official relations with WHO, the ISN is committed to enhancing NCD integration in humanitarian responses.
In addition to official participation in the GHLTM, the ISN Renal Disaster Task Force Working Group was invited to host the official side event on dialysis. Attendees included representatives from health and non-health sectors of WHO Member States, with priority given to low- and middle-income countries in acute, protracted humanitarian crises and fragile, conflict-affected and vulnerable (FCV) settings.
Participants included UN agencies, multilateral and bilateral funding agencies, international organizations, humanitarian agencies, the International Committee of the Red Cross, the International Federation of the Red Cross and Crescent Societies, and global financial institutions.
This event shed light on the challenges faced by dialysis-dependent individuals in disasters, emphasizing the urgency for a collaborative response. In its official capacity, the ISN seeks to strengthen policy considerations for kidney disease in emergency settings and NCD care in general, particularly in the lead-up to the UN High-Level Meeting on NCDs in 2025.
“An Update on the Global Disparities in Kidney Disease Burden and Care Across World Countries and Regions” has been published in The Lancet Global Health.
Read the paper here.
In the same edition, The Lancet Global Health published an editorial on the paper: “The Major Global Burden of Chronic Kidney Disease.” Read the editorial here.
The ISN-Global Kidney Health Atlas (ISN-GKHA) is a worldwide survey that assesses the current capacity for kidney care.
The 2023 edition builds on the work of previous editions, factoring in the impact of the pandemic and advances made since the atlas was first launched in 2016. It includes:
- An assessment of regional risk factors and hotspots for kidney diseases
- Outcomes of people living with kidney diseases treated with dialysis
- Perspectives of people living with kidney diseases on strategies to improve care and access to care
The current edition identifies shifts in kidney care disparities and efforts to address them, particularly in countries with limited resources and among vulnerable populations such as women and children in more affluent nations.
Access the 2023 ISN-GKHA findings, including all prior publications, here.
Bill Wang from the ISN Patient Liaison Advisory Group (PLAG) group will be involved in the development of a patient-facing handout that will feature in a toolkit on the optimization of SGLT2i therapies led by the ISN in collaboration with nephrologists and cardiologists from multiple societies.* The involvement of the PLAG is critical to ensuring the tool accurately reflects information patients want and need. This toolkit is set to launch in the Summer.
The PLAG previously reviewed the patient tool in the collaboration’s last toolkit on the Optimization of RAASi Therapy. The patient tool, available in English, Spanish and Japanese, was developed to support healthcare professionals in talking to their patients about RAASi therapy.
*The American Society for Preventative Cardiology (ASPC), the Heart Failure Association of the European Society of Cardiology (HFA), Kidney Disease Improving Global Outcomes (KDIGO), and the Renal Physicians Association (RPA).
