ISN Advocacy Newsletter – Bridging the Gaps – December 2023
Welcome to ”Bridging the Gaps,” the ISN’s quarterly update on ISN advocacy efforts to address the global burden of kidney disease.
As the end of another productive year approaches, I am pleased to share ISN’s involvement in global initiatives in the last quarter of 2023 and present exciting developments in our advocacy efforts to set the scene for 2024.
The ISN’s participation in the Devex and Global Coalition for Circulatory Health side events at the United Nations General Assembly was a valuable opportunity to advocate for kidney health on a global scale. These discussions highlighted the pressing need to restructure global health systems to address current challenges better.
Our involvement in a roundtable discussion on noncommunicable diseases at the European Parliament emphasized the impact of chronic kidney disease on patients, healthcare systems, and the environment. The discussions accentuated the importance of early intervention and preventive measures to transform outcomes.
The Santander Transplant Summit 2023 provided a platform to discuss complex global organ transplantation issues. Speakers emphasized the pivotal role of transplantation in contributing to UN Sustainable Development Goals.
As we prepare for World Kidney Day 2024 – “Kidney Health for All: Advancing equitable access to care and optimal medication practice,” I encourage you to explore the campaign materials on the World Kidney Day website. Engage with your audience using the provided social media toolkit, hashtags, and visuals as we work collectively to raise awareness of kidney health worldwide.
Looking ahead, we have some significant launches planned for early 2024. Three comprehensive toolkits: “Acute Kidney Injury (AKI),” “Dialysis,” and “Sharing Expertise to Support the Set-up of Renal Registries (SharE-RR)” will soon be available. These resources, developed as part of the 2021-2023 collaboration plan with the WHO, exemplify the ISN’s commitment to providing essential support and resources for kidney health.
I encourage all my colleagues to register for the World Congress of Nephrology 2024 (WCN’24) in Buenos Aires, Argentina, from April 13-16. WCN’24 will feature regionally relevant symposia, presentations, training programs, and courses, offering the latest scientific evidence and state-of-the-art education in kidney care.
Delegates will be able to enjoy real-time AI-assisted translation in over 30 languages, allowing hundreds of attendees to experience the conference in their native language.
You can consult the four-day program here.
Thank you to all our experts, contributors, and advocates who make these initiatives possible. Together, we are making significant strides in advancing global kidney care. Please do get in touch with our Advocacy Director, Anne Hradsky, to discuss how we can collaborate to achieve our collective goals.
Thank you for your dedication.
Adeera Levin, past president of the ISN (2015-17) and member of the ISN Advocacy Working Group, attended the United Nations General Assembly meetings (UNGA78) held in New York City in September. The event included the Devex meeting, where Dr. Levin was part of a panel with Marisol Robles, patient representative and president of the Mario Robles Ossio Foundation (Ms. Robles was one of the speakers at the opening ceremony of WCN’17), and Slim Slama from the WHO.
Watch a recording of the Devex meeting here.
The meeting offered the opportunity to sensitize a large global community to the importance of kidney health and disease and the impact of chronic kidney disease on individuals, societies, and the environment. WHO officials are working toward more formal resourced structures to focus on kidney-related issues.
The Global Coalition for Circulatory Health (GCCH) meeting addressed the value of advocacy for circulatory health in a panel discussion comprising a patient, a cardiologist, the Health Minister from the Philippines, and Dr. Levin.
Access a recording of the GCCH meeting here.
Dr. Levin attended two high-level meetings (HLMs) at the UN on pandemic preparedness and universal health coverage. Global, regional and national group representatives participated in the HLMs. The ISN submitted statements at both meetings.
A common theme at all the meetings was the need to reorganize global health to address the fragmented and parochial nature of current healthcare systems. Addressing structural issues will improve pandemic preparedness, responses, and resilience and help decrease health inequities.
A call to recognize the inter-relatedness of noncommunicable (NCD) and infectious diseases was made, acknowledging the impact of one on the outcomes of the other.
Dr. Levin observed: “Key messages for the future should be outward facing, supporting collaboration between and among NCD groups, and in support of integrated efforts to improve healthcare access for all.”
As part of the ISN-WHO 2021-2023 collaboration plan, the ISN is pleased to announce the release of three new toolkits in early 2024.
The ISN thanks all experts involved for their outstanding contributions.
|Acute Kidney Injury (AKI) Toolkit
This toolkit provides essential information on AKI and supports the development of specific workflows that can be adapted to different clinical settings, including low-resource ones. The toolkit facilitates AKI detection, management, and prevention, integrating key strategies highlighted in the ISN 0by25 initiative.
The toolkit was produced by the ISN AKI Toolkit Working Group – Rahul Chanchlani, Robert Kalyesubula, Vivek Kumar, and Eranga Wijewickrama – under leadership from Rolando Claure-Del Granado, and support from Jorge Cerda, Etienne Macedo, and Andrew Lewington.
This toolkit complements the ISN Framework for Developing Dialysis Programs in Low-Resource Settings, incorporatingthe patient perspective. It provides additional resources on different aspects of kidney failure care, including modalities, provider models, conservative care, person-centered plans, and ethical considerations.
The toolkit was produced by the ISN Dialysis Toolkit Working Group (Simon Davies, Brett Cullis, Ana Elizabeth Figueiredo, Arpana Iyengar, Valerie Luyckx, Abdou Niang, Henriette Tyse Nygård, Jordan ParsonsIrma Tchokhonelidze and Tushar Vachharajani
|Sharing Expertise to Support the Set-up of Renal Registries (SharE-RR) Toolkit
Renal registries provide valuable data for service planning, research, and advocacy purposes but require considerable resources and infrastructure.
Aimed at nephrologists and public health officials, the toolkit outlines strategies to establish and maintain renal registries, providing an overview of all necessary steps and considerations with adaptations for low and middle-income countries.
The ISN SharE-RR Advisory Committee developed the toolkit under the leadership of Fergus Caskey and Maria Pippias.
World Kidney Day (WKD) 2024 will take place on March 14, 2024.
This year’s theme, “Kidney Health for All: Advancing equitable access to care and optimal medication practice,” will help raise awareness of the importance of equitable access to appropriate treatment and how to delay disease progression and improve the quality of life for people living with kidney disease.
Visit the WKD website and explore the 2024 theme, call-to-action, logos and visuals available in different languages, including Arabic, Chinese, French, German, Greek, Italian, Russian, Spanish and Swahili.
Start your social media campaign and engage with your audience! Consult the social media toolkit for helpful information and resources about the 2024 campaign, including hashtags, visuals, tailored content for your social media posts, and additional tips on involving your audience in Instagram and Facebook stories, the #ShowYourKidneys challenge, or X-spaces.
The ISN was pleased to participate in the policy breakfast “Doing Better for Europe’s NCD Population: Earlier Intervention to Transform Outcomes for People and Planet” in October at the European Parliament in Brussels hosted by MEP Stelios Kympouropoulos (EPP, Greece).
The meeting was organized in collaboration with AstraZeneca and the Spanish Presidency of the Council of the EU in the framework of the European Parliament Subcommittee of Public Health’s work on noncommunicable diseases (NCDs).
Key speakers included Eveline Scheres – managing director of the European Kidney Health Alliance, Juan Carlos Julián Mauro – managing director of the Spanish Kidney Patients’ Federation, Daniel Gallego – president of the European Kidney Patients’ Federation, and MEP Margarita De La Pisa Carrión (ECR, Spain).
The event focused on the huge impact of chronic kidney disease (CKD) on patients and caregivers, the economic burden on healthcare systems (140 billion euros annually in the EU), and the high ecological cost; kidney dialysis consumes about 75,000 liters of water per year and generates significant amounts of waste and CO2 emissions.
Speakers highlighted how improving preventative measures and early intervention and detection could transform patient outcomes, reduce the socio-economic impact of CKD and support the health of our planet.
The ISN participated in the high-level meeting “Towards Global Convergence in Transplantation: Sufficiency, Transparency and Oversight” in November in Santander, Spain.
The Ministry of Health – Organización Nacional de Trasplantes organized the high-level meeting under the Spanish Presidency of the Council of the EU.
ISN Past President Vivekanand Jha took part in a panel discussion on the impact of transplantation on other United Nations Sustainable Development Goals (UN SDGs). Kidney transplantation was identified as the most important life-saving and cost-effective treatment option for people with kidney failure, a position already advocated by the ISN in its “Framework for Developing Dialysis Programs in Low-resource Settings.”
Dr. Jha commented: “We reiterated that transplantation is influenced by and contributes to several UN SDGs beyond SDG 3. It contributes to the sustainability and resilience of healthcare systems through health system preparedness and strengthening of health care services.”
Acknowledgment was made of the favorable impact of transplantation on the ongoing environmental crisis compared to dialysis.
ISN member and leader Rümeyza Kazancıoğlu noted, “The discussions covered ongoing ethical challenges in the donation and transplantation of ‘Substances of Human Origin’ (SoHO) and advocating for financial neutrality in organ donation, preventing trafficking in organs and other SoHOs, and ensuring fairness in access to SoHO-based therapies and transplantation across borders.”
The consensus called upon all nations to enact explicit regulations that ban the payment for organs and other human body parts while also strictly prohibiting human trafficking for their acquisition.
The summit suggested involving health authorities from different countries to address inequalities in organ transplants. It also highlighted the importance of transparency and vigilance by creating registries monitored by national health authorities. These registries would track all donations and organ transplants within and between countries.
ISN member Dominique Martin reported: “Among the many important recommendations and recurrent themes, what stood out for me was the need to strengthen systems for data collection, sharing and use, to improve transparency of practice and inform efforts to increase equity, address trafficking and commercialism, and improve outcomes of donation and transplantation.
The importance of collaboration between countries and various stakeholders such as health authorities, professional societies, patient organizations and industry was evident. While solutions must be tailored to the local context, many challenges are multifactorial and not limited by jurisdictional borders or regulatory distinctions between various therapies. By working together on policy, research, and advocacy, we will be more effective in responding to crises and achieving sustained progress on our common goals.”