ISN Advocacy Newsletter – Bridging the Gaps – July 2024
Bridging the Gaps: Update on the ISN’s Global Impact and Leadership in Kidney Health Advocacy
Dear members and allies,
Welcome to the latest edition of Bridging the Gaps, your go-to source for updates on ISN global kidney health advocacy initiatives. This quarterly newsletter brings you the most significant developments and successes in our collective efforts to advance global kidney care.
Recent months have been particularly significant for our community. In May, the ISN enjoyed a successful presence at the World Health Assembly in Geneva. During the assembly, the ISN hosted an impactful advocacy side event focusing on expanding access to kidney care, which received considerable attention and support from global health leaders and policymakers.
Additionally, our advocacy efforts were highlighted through the World Kidney Day campaign. This year’s campaign once again proved to be a resounding success, raising awareness about kidney disease and its prevention on a global scale. The recently released World Kidney Day impact report showcases the worldwide support and engagement, illustrating the power of collective action in the fight against kidney disease.
None of this would be possible without the dedication and support of our members, partners, and advocates. Together, we are making significant strides toward a future where kidney health is prioritized and sustainable care is accessible to all.
Thank you for your continued support and commitment. Please get in touch with the ISN advocacy team to discuss how we can further collaborate to ensure everyone has access to quality and affordable kidney health.
Best regards,
Masaomi Nangaku
ISN President
The ISN participated in the 77th World Health Assembly (WHA), which took place in Geneva from May 26 to June 1.
Five constituency statements, including Universal Health Coverage, transplantation, and the 4th High-Level Meeting on noncommunicable disease priorities, were presented to member states on behalf of the ISN, together with other signatory partners.
Read the statements here.
As a non-state actor in relations with the WHO, the ISN organized the side event “Advancing Kidney Care for All: Expanding Access to Lifesaving Therapies” at WHA77 on May 29 to emphasize the need to raise kidney disease on the global health agenda.
Watch a recording of the event here.
A diverse group of experts – WHO representatives, policymakers, and people living with kidney diseases – gathered to address the critical issue of global disparities in kidney care.
Kidney disease continues to affect approximately 850 million people worldwide(i), often with devastating consequences. It is expected to become the 5th leading cause of death globally by 2040(ii). The expert panel, featuring Dr. Valerie Luyckx (ISN), Daniel Gallego (Kidney Patients Federation), Dr. Bianca Hemmingsen (WHO), Alison Cox (NCD Alliance), and Dr. Anna Stavdal (World Organization of Family Doctors), discussed solutions and strategies to ensure that lifesaving therapies are accessible to all, regardless of geographical or socio-economic barriers.
Panelists agreed that early detection and prevention of kidney diseases are the most effective ways to save lives. Achieving this requires ongoing awareness campaigns, prioritizing kidney disease as a health priority by decision-makers, and including civil society members and individuals with lived experience in the decision-making process. This involvement is vital for ensuring equitable access to lifesaving strategies.
During the event, the former Guatemalan Health Minister, Mr. Oscar Cordón Cruz, emphasized that kidney health is a critical public health issue in his country, highlighting the significant impact of kidney diseases on the population. Recognizing the urgent need for improved kidney care, he committed to explore, along with the Central America Council of Health Ministers, the possibility of introducing a resolution on kidney diseases to the WHO, recognizing it as a priority noncommunicable disease (NCD). “We need to address the medical and legal aspects of kidney transplants. This approach is crucial for effective kidney care, ensuring we create strong policies that enhance access and outcomes for all patients in our region.”
The Guatemalan Minister’s commitment to this initiative signals a promising step toward international collaboration. It emphasizes the importance of engaging with the WHO to fulfill the ISN mission to “Advance kidney health globally. Together.”
The meeting was organized in collaboration with Devex, with support from AstraZeneca, Boehringer Ingelheim & Lilly, and Novartis.
(i) Francis, A., Harhay, M.N., Ong, A.C.M. et al. Chronic kidney disease and the global public health agenda: an international consensus. Nat Rev Nephrol (2024). https://doi.org/10.1038/s41581-024-00820-6
(ii) EKHA, Kidney Manifesto 2024, https://ekha.eu/kidney-manifesto/
At the 77th World Health Assembly, Member States adopted a groundbreaking resolution on increasing availability, ethical access and oversight of human cell, tissue, and organ transplantation. This agreement endorses the updated World Health Organization (WHO) guiding principles on human cell, tissue, and organ transplantation.
Read the resolution here.
As a non-State actor in official relations with the WHO, the ISN, alongside other signatories, welcomed the resolution and presented a constituency statement to governments emphasizing the importance of prioritizing cost-effective transplant treatments within national health systems.
Access the statement here .
The statement highlights the need to:
- Evaluate both patients and donors
- Provide clear information on risks and benefits
- Maintain registries for treatment data collection
- Establish biovigilance systems before considering xenotransplantation support
This resolution is expected to be discussed at the January 2026 WHO Executive Board meeting before seeking approval at the 2026 WHA.
The ISN looks forward to working closely with decision-making authorities and partners to develop and support the resolution implementation strategy.
World Kidney Day (WKD) 2024 was marked on March 14.
A record-breaking 1,842 activities were organized worldwide to support the year-long campaign “Kidney Health for All – Advancing Equitable Access to Care and Optimal Medication Practice.” These included walks, runs, health screenings, webinars, conferences, and illuminated landmarks.
Browse photos of global WKD activities here.
Social media played a significant role, with #WorldKidneyDay posts generating 146 million impressions. More than 20 celebrities publicly marked WKD through social media, interviews, and public outreach activities. In addition, the United Nations, multiple WHO regional offices, European DG SANTE, and various Ministries of Health used social media to emphasize prevention strategies to reduce the burden of kidney disease.
Consult the full impact report 2024 here.
In addition, every year, a scientific editorial is written to celebrate World Kidney Day. The papers are on scientifically relevant topics that link to the campaign as a scientific basis for the annual theme.
Read the WKD editorial 2024 here.
Help us to keep the momentum going! Here’s how to stay involved:
- Subscribe to the WKD newsletter to stay up-to-date
- Share WKD content to amplify the message.
- Tag @WorldKidneyDay in your posts and use the hashtags #WorldKidneyDay and #KidneyHealthForAll.
- Organize a local activity to raise awareness about kidney disease and pin it to the interactive map.
The ISN contributed to the WHO’s web-based consultations on the director-general’s report on priorities for the Fourth High-level Meeting on NCDs – to be held in 2025 – and the NCD financial framework.
The ISN submitted comments emphasizing the critical role of kidney health in the broader NCD agenda and urged policymakers to provide policy and funding support proportionate to the disease burden. The ISN also shared information about these consultations with ASN and ERA, who submitted contributions that leverage messages from our recent joint publication, “Chronic Kidney Disease and the Global Public Health Agenda: An International Consensus.”
The ISN is preparing for a prominent role at the 79th United Nations General Assembly scheduled for September 10-24, 2024, in New York, USA.
The ISN will participate in two-panel discussions and host an exhibition showcasing the burden of kidney disease, leveraging data from the ISN-Global Kidney Health Atlas. Through these initiatives, the ISN aims to engage directly with policymakers, highlighting the importance of kidney health within global and national health policy agendas.
The Declaration of Istanbul Custodian Group (DICG) has launched a campaign to participate in the United Nations Office on Drugs and Crime’s World Day Against Trafficking in Persons, held on July 30.
Access DICG resources on organ trafficking here.
The DICG’s theme for the campaign is “Recognizing Red Flags for Organ Trafficking,” highlighting warning signs that a potential donor is at high risk for trafficking. Find out more here.
The ISN encourages all to support the DICG campaign by:
- Broadcasting and sharing this poster with colleagues
- Helping identify additional “red flags” here.
- Attending a webinar on July 30 – find out more and register here
Thank you in advance for your support.
Read the current issue of the Declaration of Istanbul on Organ Trafficking and Transplant Tourism (DICG) newsletter here.
Aligning with the 2024 World Kidney Day theme “Advancing equitable access to care and optimal medication practice,” Nature Reviews Nephrology has published an editorial on innovative therapies for diabetic kidney disease (DKD). Five global experts* from different world regions, including authors of the 2024 World Kidney Day scientific editorial, discuss barriers that must be overcome to ensure equitable access to care and medication.
These experts focus on the impact of SGLT2 inhibitors and non-steroidal mineralocorticoid receptor antagonists on their therapeutic approach to patients with DKD. In addition, the contributors highlight the need for improved clinical trials to validate the effectiveness of new therapies and advocate for policy changes to ensure equitable global access to treatment.
Discover the full editorial here.
*Ricardo Correa-Rotter, Louise J. Maple-Brown, Rakesh Sahay, Katherine R. Tuttle, and Ifeoma I. Ulasi
The ISN is committed to highlighting kidney health in the global health agenda and actively advocates with the World Health Organization to prioritize kidney health as a critical noncommunicable disease (NCD).
Earlier this year, Nature Reviews Nephrology published “Chronic Kidney Disease and the Global Public Health Agenda: An International Consensus,” highlighting kidney disease as a leading contributor to premature mortality among NCDs.
Key recommendations from the international consensus include:
- Improved access to care
- Better prevention strategies
- Development and scaling of care models
- Greater awareness and education
- Addressing social determinants
- Increased funding for research
- International cooperation
- Engagement with patient communities
For wide dissemination and use of the international consensus findings and recommendations, download the infographic on the global burden of kidney disease and the call to action to address it. The infographic educates the public and highlights the urgent need to prioritize kidney health in global healthcare.
Access valuable resources to help prioritize kidney disease as a global health issue here.
The ISN urges all to use and disseminate these resources to advance global kidney care advocacy efforts.
The ISN Patient Liaison Advisory Group (PLAG) continues to play a crucial role in supporting the ISN’s efforts to develop initiatives and shape policies that advance kidney health worldwide.
The ISN has updated its “Resources for People Living with Kidney Disease webpage to feature personal stories, a map of patient organizations, educational tools, and links to World Kidney Day. The PLAG has recently provided valuable guidance in developing a survey to ensure these patient resources remain relevant and useful.
Take the two-minute survey here until the end of July 2024
In addition, PLAG representatives participated in recent ISN events, including a World Kidney Day webinar, where Bill Wang, chair of the advisory group, provided the patient perspective on advancing equitable access to care and optimal medication practice.
PLAG members also collaborate with ISN-ACT Global Trials Focus members on the ISN “Guide for Everyone” series, which simplifies selected clinical trials for the layperson.
Access the “Global Kidney Trials Insights: A Guide for Everyone” here
As a new feature of the ISN-Global Kidney Health Atlas 2023 edition, the ISN surveyed people living with kidney diseases, including PLAG members, to incorporate their perspectives on kidney care availability and access.
Access and download the 2023 ISN-GKHA here.
The ISN remains committed to prioritizing the voices of those living with kidney disease in its efforts to advance global kidney care.
