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New! Bridging the Gaps – ISN’s Advocacy Newsletter

ISN Advocacy Newsletter – Bridging the Gaps – June 2023

Advocating for Policies to Advance Equitable Kidney Care and Empower People With Kidney Diseases: Learn About The Latest ISN Advocacy Initiatives Now

Welcome to Bridging the Gaps, the ISN’s quarterly update on our advocacy efforts to address the global burden of kidney disease. I am honored to present this newsletter for the first time as ISN president.

Thanks to your support, we have achieved remarkable global progress in bridging the gaps in kidney care this last quarter. The 2023 World Kidney Day campaign, “Kidney Health for All – Preparing for the unexpected, supporting the vulnerable!” reached over 436 million people on social media in over ten languages. Over 1500 activities were held in 92 countries, and the #ShowYourKidneys challenge successfully reached 4.9 billion people online.

In March, we hosted the “Professor Donal O’Donoghue Global Kidney Policy Forum” during WCN’23 in Bangkok, Thailand. A month later, we met with key European policymakers and partners to celebrate 80 years of dialysis and explore innovative solutions for kidney patients.

At the World Health Organization’s (WHO) 76th World Health Assembly (WHA), we collaborated with partners to call on member states to prioritize noncommunicable diseases (NCDs) in national pandemic prevention and response plans. We advocated for essential NCD services to be included in national universal health coverage (UHC) schemes. We also urged the inclusion of interventions to control common NCD co-morbidities in Appendix 3 of the Global NCD Action Plan 2013-2030. The ISN co-signed two additional statements on well-being and health promotion and social determinants of health and air pollution.

During the WHA, the ISN held a first stand-alone event in collaboration with Devex, “From Neglected NCD to Priority: Accelerating Action on Kidney Disease,” with support from the Bangladesh and Ethiopian Ministry of Health. We also launched the ISN-Global Coalition for Circulatory Health joint position paper, “The Road to UHC. Why Integration of Circulatory Health Interventions in Primary Care is Essential.” These initiatives seek to raise awareness of kidney disease, the “silent killer,” and provide insights for the upcoming UN High-Level Meeting (UNHLM) on UHC.

These tireless and enthusiastic advocacy efforts are helping to shape the future of global kidney care. With your ongoing support, we can continue to work together efficiently and successfully toward equitable access to sustainable kidney health for all.

If you have any suggestions or ideas, please don’t hesitate to contact the ISN’s Advocacy Director, Anne Hradsky.

Masaomi Nangaku
ISN President

The ISN hosted the “Professor Donal O’Donoghue Global Kidney Policy Forum 2023 (PDOGKPF’23): Focus on Oceania and South-East Asia” on March 30 as part of World Congress of Nephrology (WCN’23) activities. The PDOGKPF’23 brought key decision-makers and stakeholders together to address the burden of kidney diseases and discuss policies to improve their prevention and management at regional and global levels.

Key speakers included Dr. Bente Mikkelsen, director of the WHO’s NCDs Department, Dr. Sophon Mekthon, Vice Public Health Minister of the Thai Royal government, Dr. Yot Teerawattananon from the Thai Ministry of Public Health’s Health Intervention and Technology Assessment Program who spoke on behalf of Dr. Opas Karnkawinpong, permanent secretary for Public Health, Dr. Jadej Thammaaree, secretary general of the National Health Security Office, and Mr. Bill Wang, kidney patient advocate.

This was the fifth meeting in the ongoing series of ISN Policy Forums. An important outcome of the first GKPF, which took place in Mexico in April 2017, was the creation of the Recommendations to Global Kidney Health developed by stakeholders to address the significant growth of kidney disease worldwide. The recommendations were designed to guide efforts to reduce this burden and provide the foundations for subsequent forums. in line with the latest international health policy discussions.

Held in a hybrid format, this year’s forum was endorsed by the Asian Pacific Society of Nephrology and the Nephrology Society of Thailand. More than 60 attended in person, including representatives from the WHO, the United Nations Office on Drugs and Crime, Thailand’s National Health Security Office, and the Malaysian Ministry of Health. More than 450 people attended online, predominantly from China, Thailand, and Malaysia.

The ISN will continue working with regional partners to motivate policymakers and politicians to activate change to advance equitable access to kidney care, stressing the vital need to adhere to and implement the “Recommendations to Global Kidney Health” to do so.

In parallel, our efforts are turning toward the next PDOGKPF at WCN’24 in Buenos Aires, Argentina, which will be held in collaboration with the Argentinian Society of Nephrology (ASN) and the Latin American Society of Nephrology and Hypertension (SLANH).

The ISN attended the 76th World Health Assembly (WHA) in Geneva in May, presenting five separate constituency statements and holding an inaugural stand-alone event in collaboration with Devex. During the same week, the WHA approved 2023-2025 collaboration plans with non-state actors, including the ISN.

Three joint statements, co-signed with partners in the NCD Alliance and the World Heart Federation (WHF), focused on the following:

The ISN also co-signed a fourth constituency statement on well-being and health promotion alongside the NCD Alliance and a fifth on social determinants of health and air pollution under the WHF’s lead.

Seeking to inform the upcoming UN High-Level Meeting (UNHLM) on UHC and align with Sustainable Development Goals, the ISN-Devex event “From Neglected NCD to Priority: Accelerating Action on Kidney Disease” took place in person on May 24.

Renowned experts such as Dr. Slim Slama, WHO unit head of NCD Management, Dr. John Amuasi, co-chair of The Lancet One Health Commission, and Professor Vivek Jha, executive director of The George Institute for Global Health, presented on various aspects of kidney disease, emphasizing the need for global attention and practical strategies to enhance action and investment in low- and middle-income countries.

Mr. Joab Wako, a transplant recipient and chair of the ISN Patient Liaison Advisory Group, shared valuable insights into the challenges people living with kidney disease face. Ms. Helen McGuire, global program leader for noncommunicable diseases at PATH, discussed community-based solutions to enhance health systems for kidney disease care. The Honourable Minister of Health of Ethiopia, Dr. Lia Tadesse Gebremedhin, and the Director General of Medical Education at the Bangladesh Ministry of Health, Dr. Md. Titu Miah, presented experiences and initiatives in kidney disease management.

The 76th WHA was also a fitting opportunity to launch the ISN-Global Coalition for Circulatory Health joint position paper, “The Road to UHC. Why Integration of Circulatory Health Interventions in Primary Care is Essential,” in preparation for the next UNHLM on UHC. The paper presents case studies and best practices in primary care from low- and lower-middle-income countries, urging Member States to include basic circulatory health services in their UHC benefit packages.

The ISN advocacy team contacted approximately three hundred high-level policymakers of , WHO officials, and key stakeholders to share the results of the Global Kidney Health Atlas (ISN-GKHA) 2023 edition, launched at the PDOGKPF’23 at WCN 2023.

Updated every four years according to the WHO’s “building blocks” of health systems, the latest report includes the perspective of people living with kidney diseases. It presents the latest data on the global and regional capacity to provide care for people living with chronic kidney disease and kidney failure. For this edition, a record number of countries participated in the survey: 167 countries representing 97.4% of the world’s population.

Among other findings, the 2023 ISN-GKHA shows that the global burden of kidney failure remains significant partly due to high treatment costs and the extensive impact on the health and well-being of people living with kidney disease. Identifying gaps in key aspects of kidney care worldwide, the 2023 ISN-GKHA demonstrates that these gaps are particularly prevalent in low- and middle-income countries.

By widely circulating the report with national and international policymakers and stakeholders, the ISN aims to guide policy and advocacy efforts to promote optimal and universal kidney failure care and provide benchmarks to help countries track their progress over time.

As a European Kidney Health Alliance (EKHA) member, the ISN joined the film screening and roundtable, “Celebrating 80 Years for Dialysis: Time Again for Science-fiction to Meet Reality,” organized by the EKHA at the European Parliament in Brussels in April.

Hosted by MEPs Ondřej Knotek and Martin Buschmann, co-chair of the MEP Group for Kidney Health, the event brought together high-level stakeholders in patient advocacy, nephrology, and policy-making to raise awareness of the physical and mental burden that kidney disease and treatment have on kidney patients and to discuss innovative solutions to dialysis 80 years after its invention.

Professor Raymond Vanholder, EKHA president, commented, “We [in the kidney community] are too shy and do not express what kind of burden this is for societies; we need to urgently raise awareness on these issues.”

All the speakers highlighted the pressing need to make treatment easier for people with kidney diseases. Daniel Gallego, president of the European Kidney Patients’ Federation, who has undergone dialysis since 1995, affirmed, “After 80 years of dialysis, we [have] learned that patients prefer quality of life over a long life; it makes no sense just to survive, we need quality. Treatments are far from adequate even today ̶ [the] tech revolution didn’t reach kidney care.”

This burden led the late Delphine Blanchard, a kidney patient representative from the EKHA member association Renaloo, to the tragic decision to voluntarily stop her dialysis treatment, resulting in her premature death in 2022, aged 45. The event was organized as a tribute to her in the hope that it would serve as a wake-up call for European and national policymakers to prioritize research and investment for innovative and less-invalidating kidney disease treatments.

MEP Knotek urged more attention to kidney disease within European institutions, especially now that new technological advancements in kidney care are on the horizon. He emphasized, “Without action, the healthcare system won’t be sustainable anymore…it is time to put innovation for the treatment of chronic diseases among the top EU priorities.”

With momentum building at the EU level, the ISN will continue to work alongside the EKHA and other partners to help develop forward-looking policy solutions to improve the lives of people with kidney diseases in Europe and elsewhere.

The 2023 World Kidney Day (WKD) campaign successfully raised awareness of the impact of disastrous events on people living with kidney disease. The 2023 campaign focused on the need for better preparation in planning responses before, during, and after a crisis to minimize disruptions in kidney care and save as many lives as possible.

The recently published 2023 WKD impact report highlights global efforts to promote kidney health, including over 1,500 activities organized in more than 90 countries.

WKD achieved remarkable traction through in-person activities and made a significant impact online, reaching over 436 million people through #worldkidneyday and its associated messages on social media.

The #ShowYourKidneys challenge proved popular among doctors, patients, and advocates, reaching 4.9 billion people online. Free WKD resources for the general public were also in demand: the toolkit was downloaded 6.8 thousand times. The campaign attracted media attention in 32 countries, notably with the publication of the WKD 2023 scientific editorial in Kidney International®.

The success of WKD 2023 was made possible by the support of 152 WKD champions from more than 70 countries. The regional reports showcase their inspiring experiences and initiatives.

WKD, the ISN and IFKF-WKA are thankful to everyone who made WKD 2023 an extraordinary day.

Mr. Manvir Victor, past chair and member of the ISN Patient Liaison Advisory Group, reports on transplant awareness walks in Malaysia:

“The third consecutive monthly “Transplant Awareness Walk” took place the last weekend in May in Kuala Lumpur. The walks were initiated in March 2023 by myself and Mr. Siva Kumar Raghavan, the first Malaysian dialysis patient to summit Mount Kinabalu in 2022. These “first-of-a-kind” walks have progressively become more popular.

Taking place every last Sunday of the month at one of the most frequented parks in Kuala Lumpur, Lake Titiwangsa, the walks aim to create a relaxed environment where people waiting for kidney transplants and their families can access healthcare professionals outside the clinical setting.

Participants joining the patients include transplant surgeons, nephrologists, nurses, medical students, and caregivers, but walks are open to everyone and are free of charge.

Mr. Raghavan and I are both kidney transplant recipients. We hope that these walks will pick up in other states in Malaysia, connecting more healthcare professionals with patients and future transplant patients.”

For more details on the “Transplant Awareness Walks” in Kuala Lumpur, follow @manvirvictor on Twitter.

Mr. Joab Wako*, chair of the ISN Patient Liaison Advisory Group, reports on his experience at the 2023 International Alliance of Patients’ Organizations (IAPO) Global Patients Congress (GPC 2023):

“The GPC 2023 comprised a packed program of talks and sessions from passionate speakers celebrating and learning from patient engagement and co-creation to help improve the availability and accessibility of safe and innovative health care.

The IAPO congress took place in Geneva, a few kilometers from where the 76th World Health Assembly (WHO) was being held. This synchronicity was no coincidence; this year’s IAPO congress focused on including patients or persons with a lived experience, like me, at all levels of health governance and decision-making. What better time and place to hold this than during the World Health Assembly, where 194 WHO member states, partner agencies, representatives of civil societies, and experts gather to discuss current and future priorities for global health?

Since the WHO celebrates its 75th anniversary this year, the IAPO congress looked at the key role patients and patient organizations play in co-creating and advancing global health.

Patients are at the center of healthcare systems. We must co-design future systems in the wake of advancing digital health, artificial intelligence, and machine learning.”

Watch a recording of the congress here.

*Mr. Wako has a record of accomplishments in championing the lived experience with WHO and took part in the consultation process to draft the WHO Framework for Meaningful Engagement of People Living with NCDs and Mental Health and Neurological Conditions, eventually co-chairing its launch on May 11, 2023. This framework seeks to support the WHO and its Member States to include input from people with lived experience within health-related programs and policies. Mr. Wako also shared valuable insights into the challenges faced by people living with kidney diseases as a speaker at the recent ISN-Devex event at WHA76.

The ISN is pleased to announce that the joint ISN-IDF policy brief Renewing the Fight: A Call to Action for Diabetes and Chronic Kidney Disease” will be launched at a webinar taking place on July 13, 2023, from 2-3.15 p.m. CEST. 

Register for the webinar here.   

Aimed at advocates, healthcare professionals, and policymakers involved with people living with diabetes and kidney disease, the policy brief provides recommendations on action required to prevent, manage and treat this condition effectively. It also includes best practice examples and testimonies from people with lived experience of diabetes and kidney disease.  

The webinar includes the following: 

  • Opening remarks from ISN and IDF Presidents Dr. Masaomi Nangaku and Professor Akhtar Hussain respectively 
  • Talks from the brief’s lead authors, Dr. Antonio Ceriello (IDF) and Dr. Roberto Pecoits-Filho (ISN), on key highlights of diabetes and kidney disease data and policy recommendations  
  • A presentation from Dr. Shaifali Sandal, from the ISN Advocacy Working Group and current Emerging Leaders Program cohort, on the importance of the brief and its utility in advocacy efforts 

Ms. Anita Sabidi, an IDF Blue Circle Voice from Indonesia who lives with diabetes and kidney disease, will moderate the webinar. 

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