ISN Advocacy Newsletter – Bridging the Gaps – September 2022
Bringing Global Kidney Health to the Forefront: ISN Advocacy Update on WHO collaborations; WKD; Dialysis Roundtable; Patient Advocacy, and More
Welcome members and allies to Bridging the Gaps, the ISN’s quarterly update on how we advocate and collaborate with patients and partners to address the global burden of kidney disease.
While kidney disease’s mortality rate continues to increase yearly, it is still the “silent killer” and does not currently dominate either political or public discourse. This quarter, we urged the World Health Organization to add kidney-relevant diagnostics and treatment to their list of policy options and highlighted cost-effective interventions Member States should prioritize to prevent and control NCDs in the 2nd round of consultations on Appendix 3.
We are also bringing kidney health to the forefront of public discourse with the 2023 World Kidney Day campaign. Unsurprisingly, and as recent years have sadly shown to all of us, in the face of emergencies, people living with kidney disease are among the most vulnerable in the population due to their ongoing requirements for consistently coordinated care.
The 2023 World Kidney Day campaign, proudly launched on September 15, Kidney Health for All – Preparing for the unexpected, protecting the vulnerable! will shed light on how disastrous events, natural or man-made, impact people living with kidney disease and will equip policymakers, health care services, governments, industry, as well as people living with kidney disease and their carers, with the right tools to be prepared for unexpected events in the best possible way.
Finally, we will explore new partnership possibilities to bridge the gaps in kidney care for future generations in the World Health Organization’s Youth Council. In this new international arena, we will continue raising awareness of the growing burden of kidney disease and advocating to make kidney health a priority on the global NCDs agenda.
None of this will be achievable without your ongoing support, so please do get in touch with our new Advocacy Director, Anne Hradsky, to discuss how we can collaborate to help deliver a future where everybody has equitable access to sustainable kidney health.
Agnes Fogo
ISN President
We are pleased to announce that ISN Young Nephrologists Committee (YNC) member, Marina Wainstein, has been selected to serve on the World Health Organization (WHO) Director-General’s Youth Council for a term of two years.
At the Youth Council, Marina Wainstein will engage with young people from health and non-health backgrounds worldwide to advise the Director-General on global health issues. She will join monthly meetings with other young skilled professionals to discuss relevant topics and new initiatives and build connections. This role places her in a prime position to continue raising awareness of the growing burden of kidney disease and the need to prioritize kidney health on the global NCD agenda.
WHO Director-General Dr. Tedros Adhanom Ghebreyesus comments, “Young people are less at risk of severe disease and death from COVID-19 but will be the most affected by the long-term consequences of the pandemic, which will shape the world they live and work in for decades to come”. To this end, “The WHO Youth Council has been set up to hear their voices and experiences, and to harness and expand their energy and ideas to promote and protect health for all.”
World Kidney Day 2023 will be celebrated on Thursday, March 9.
As announced in May, the World Kidney Day (WKD) Steering Committee has declared 2023 the year of Kidney Health for All – Preparing for the unexpected, supporting the vulnerable!
In emergencies, people with kidney disease are among the most vulnerable due to their ongoing requirements for consistent, coordinated care. The 2023 campaign will focus on raising awareness about the needs and challenges of this susceptible group.
The campaign encourages policymakers, health care services, governments, industry, and people living with kidney disease to prepare for unexpected events to avoid disruption to diagnosis, treatment, and care.
Find out everything you need to know about WKD 2023 here.
Be prepared and show support: Join us in raising awareness of the impact disastrous events have on people living with kidney disease – use and share the 2023 WKD banners on your website and social media channels to let your community know that the WKD 2023 campaign has officially launched.
The “ISN Framework for Developing Dialysis Programs in Low-Resource Settings,” developed as part of the ISN’s work as a non-state actor in official relations with the World Health Organization (WHO), has also been published in French and can be consulted here.
The framework, first launched at the World Congress of Nephrology 2021 (WCN’21), outlines the requirements and operational considerations for setting up or expanding dialysis programs in resource-constrained locations. It is intended as a guide to support WHO member states in developing sustainable strategies for treating patients with kidney failure.
The prevalence of chronic kidney disease (CKD) and kidney failure is increasing worldwide, and KD-related mortality is projected to be the fifth leading cause of death by 2040. The number of people receiving kidney replacement therapy is projected to reach 5.4 million by 2030. Advancing care for CKD patients is therefore essential to achieving Sustainable Development Goal (SDG) 3.4 to reduce premature mortality due to NCDs by one-third by 2030.
The ISN is pleased to equip French-speaking WHO member states with the knowledge to implement multi-sectoral policies to reduce the main risk factors common to all NCDs and develop kidney replacement therapy programs that include kidney transplantation and conservative kidney management. Bonne lecture!
Please join us in congratulating current ISN Patient Liaison Advisory Group member Ms. Vasundhara Raghavan, CEO and founder of Kidney Warriors Foundation, who recently presented her experience as a kidney patient and advocate at the AAKP 4th Annual Global Summit on Kidney Innovations.
Congratulations are also due to ISN Patient Liaison Advisory Group’s past Chair, Mr. Manvir Victor, who recently succeeded in climbing Malaysia’s tallest peak to raise awareness of the importance of organ donation in the country.
Climbing Mount Kinabalu on the 10th anniversary of his life-changing kidney transplant, Mr. Victor stated that the climb was “far less than the pain and suffering I endured during my ten years on dialysis.”
In line with the principles of the Declaration of Istanbul, Mr. Victor has been guiding ISN Patient Liaison Advisory Group members to advocate for policies to increase the rate of organ donation and transplantation in different parts of the world. Mr. Victor is working to meet the national need for organ transplantation in Malaysia and campaigning to change the country’s donor system from opt-in to opt-out.
With Mr. Victor now handing over his chair role to Mr. Joab Wako from Kenya and Mr. Bill Wang joining the group as the new North East Asia representative, the ISN continues working toward increased consideration of the needs and perspectives of those living with kidney disease in the design and implementation of health policies worldwide.
The ISN has officially submitted its list of comments on the recently published 2nd draft of the updated Appendix 3 to the Global Action Plan for the prevention and control of noncommunicable diseases (NCDs) 2013–2030 (also known as the NCD “best buys” and other recommended interventions) to the World Health Organization (WHO).
Designed to support the implementation of the action plan’s six objectives, Appendix 3 outlines policy options and cost-effective interventions Member States should prioritize to prevent and control NCDs.
Following an initial consultation with non-state actors in 2016, this second round of input takes new evidence of cost-effectiveness and WHO recommendations into account and seeks to refine some interventions based on lessons learned from the use of previous versions.
Chronic kidney disease (CKD) is still not included among the NCDs explicitly targeted by the WHO Global Action Plan, even though it affects approximately 850 million people. This presents an enormous burden for healthcare systems and negatively impacts health outcomes of other major NCDs, namely diabetes and cardiovascular disease (CVD). To this end, the ISN reiterated its demands from the previous consultation, suggesting several kidney-disease-specific interventions and kidney disease risk assessments for CVD or hypertension patients.
While supporting the goals and implementation of the Global Action Plan, the ISN continues working alongside the WHO and other partners such as the NCD Alliance to make kidney health a priority on the global NCD agenda and to emphasize the clinical, economic and social burdens of kidney disease, at present frequently underestimated.
The ISN is pleased to announce its participation in the hybrid roundtable, ‘Quality of Life in Dialysis Care,’ which will be hosted in Madrid by our partner, the European Kidney Health Alliance (EKHA), on September 29, 2022.
The event is organized as a follow-up to the European Kidney Patients’ Federation’s White Paper on Living Better with CKD (2021) to discuss and identify ways to improve the quality of life for patients on dialysis. High-level stakeholders will come together to discuss concrete policies to benefit kidney patients throughout Europe, allowing ISN members to express their views and concerns on the topic.
As noted by nephrologist and member of the European Renal Association-European Dialysis and Transplant Association Dr. Philippe Chauveau, “dialysis is a successful treatment, but it is not a cure. It offers the possibility that one’s health condition will not worsen in the coming years”.
Dialysis is very time-consuming for patients, who face multiple burdens and often give up on some parts of their lives, including work. However, some modifications could improve their experience. The main priority appears to be determining the optimal length of time and frequency of hemodialysis for individual patients to reduce itching, fatigue, and restless legs.
With momentum building at the EU level, the ISN is committed to working alongside the EKHA to help develop forward-looking policy solutions to improve the lives of people suffering from kidney disease and secure an effective inclusion of patient voices in the design and implementation of health policies worldwide.
