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ISN Advocacy Newsletter – Bridging the Gaps – November 2021

Bridging the Gaps: Highlighting ISN Advocacy Initiatives and Partnerships to Activate Change and Support Kidney Patients

img Welcome members and allies to Bridging the Gaps, the ISN’s quarterly update on how we are advocating and collaborating with patients and partners to address the global burden of kidney disease.

As we continue to battle against the existential challenges posed by the COVID-19 pandemic and climate change, it is perhaps understandable that the ‘silent killer’ – kidney disease – is not currently dominating political or public discourse.

However, with over 850 million people worldwide living with some form of kidney disease and their vulnerability from the effects of the pandemic and climate change, kidney patient perspectives must play a central role in the development of policy responses to such global threats.

Accordingly, we are delighted to announce the launch of the ISN’s Patient Liaison Advisory Group. This group will guide us as we factor kidney patients’ views and experiences into efforts to shape new commitments to climate change, following COP26 and, ahead of the special session of the World Health Assembly, to improve government preparedness and responses to future pandemics.

With kidney disease-related mortality continuing to increase yearly and projected to be the 5th leading cause of death by 2040, it is appropriate that the 2022 World Kidney Day’s theme is “Kidney Health for All: Bridge the knowledge gap to better kidney care.” The campaign seeks to reduce the kidney care knowledge gap for the general public, healthcare professionals, and policymakers.

None of this can be achieved without your ongoing support; so, please get in touch with our Advocacy Director, Paul Laffin, to discuss how we can collaborate to help deliver a future where everybody has equitable access to sustainable kidney health.

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Agnes Fogo

ISN President

ISN’s Patient Liaison Advisory Group held its inaugural meeting on November 15. This group, composed of a patient representative from each of the ten ISN regions, will support ISN’s efforts to shape policies to tackle kidney disease worldwide.

The ISN considers patient participation in healthcare-related decision-making to be essential in shaping effective healthcare systems. It firmly supports WHO’s 1978 Alma Ata Declaration that “people have the right and duty to participate individually and collectively in the planning and implementation of their health care.”

Health services need to be inclusive, established by and for the communities they serve. With over 850 million people living with kidney diseases and a disproportionate impact from the pandemic and climate change on this group, kidney patient voices must be audible and play a prominent role in designing and implementing the policies that directly affect their lives.

The official launch of the Patient Liaison Advisory Group will take place at the World Congress of Nephrology 2022.

The 2022 World Kidney Day (WKD) campaign, launched on September 16, declared 2022 the year of “Kidney Health for All.” The campaign focuses on increasing education on and awareness of kidney health and reducing the knowledge gap in understanding chronic kidney disease (CKD).

CKD is common, affecting one out of ten adults worldwide, and harmful –  if left untreated, it can be deadly. However, a lack of knowledge on this condition prevents progress in reducing mortality rates. The WKD 2022 campaign calls on kidney health stakeholders, healthcare professionals and authorities, and others who want to make a difference to engage with the campaign to help bridge this gap.

Every year, WKD is celebrated worldwide on the second Thursday in March with countless local and national events. These activities include dedicated runs, webinars, art exhibitions, charity dinners, WKD color displays, and dozens of other celebrations. This year, WKD takes place on March 10, so explore the list of suggested activities here and use the free resources to communicate the WKD 2022 message worldwide.

The ISN was delighted to collaborate with the NCD Alliance in a film produced for AstraZeneca by BBC Storyworks Commercial Productions to raise awareness of kidney health worldwide as part of “Facing Forward,” a series of films and articles raising the profile of noncommunicable diseases by hearing directly from patients around the world.

The ISN President, Professor Agnes B. Fogo, features in the film on chronic kidney disease (CKD) in the series. She explains the vital role that kidneys play in the body’s overall health and how preventive measures are the only option available to reduce the onset of kidney disease.

Awareness-raising is especially important for timely identification, appropriate intervention, and proper treatment because of the “silent” nature of kidney diseases. Kidney patients often lose up to 90% of their kidney function before experiencing any symptoms of kidney disease. Up to 82% of people with stage 3 CKD are undiagnosed, while half remain undiagnosed even at stage 4-5 when symptoms typically become apparent.

Patient ambassadors Abigail Ashley (Ghana), Fabrice Huré (France), Miracle Okon Ekpo (Nigeria), and Vicki Grey (Australia) share their stories in an article produced for AstraZeneca by BBC StoryWorks highlighting the global experience of CKD.

The ISN, a member of the Global Coalition for Circulatory Health (GCCH) Leadership Group, jointly published with the GCCH the position paper, “Preventing the next pandemic: The case for investing in circulatory health,” presenting a clear rationale and actionable proposals for WHO member states to address circulatory health in their emergency preparedness plans.

Members of the GCCH had previously presented a statement at the 74th World Health Assembly (WHA) in May 2021, in light of the devastating physical, mental, and fiscal impact that the COVID-19 pandemic has had on millions of people living with noncommunicable diseases (NCDs), and their greater risk for severe forms of COVID-19.

Following the WHA’s decision to reconvene later in the year to discuss a formal instrument for improving global pandemic preparedness, the GCCH decided to expand on the joint statement and develop a position paper. This paper calls for the development and inclusion of effective strategies to address circulatory health in emergency preparedness plans and includes a set of recommendations to support WHO Member States in taking concrete steps toward a pandemic-free future.

A high-level GCCH webinar marked the launch of the position paper on October 12, 2021. The welcome remarks, delivered by the World Heart Federation President Fausto Pinto, and the World Health Organisation Director-General, Tedros Adhanom Ghebreyesus, were followed by two panel discussions on the correlation between COVID-19 and circulatory health and the transformations and investment needed to help tackle the consequences. The ISN’s immediate Past President, Vivekanand Jha, moderated the session alongside the Executive Director of the Framework Convention Alliance, Leslie Rae Ferat.

The “ISN Framework for Developing Dialysis Programs in Low-Resource Settings,” developed as part of the ISN’s work plan as a non-state actor in official relations with the World Health Organization (WHO), has now also been published on the WHO official website page on noncommunicable diseases (NCDs).

The framework outlines the requirements and operational considerations for setting up or expanding dialysis programs in resource-constrained settings and is intended as a guide to support WHO member states in developing sustainable strategies to treat patients with kidney failure. It was developed with guidance and technical reviews by WHO staff and launched at the ISN’s Global Kidney Policy Forum during the World Congress of Nephrology 2021.

The WHO’s recognition of the importance of the framework is essential to meet Sustainable Development Goal (SDG) 3.4, which seeks to reduce early death from NCDs by one-third by 2030. This goal can only be achieved by improving treatment for all patients with chronic kidney disease (CKD).

The framework aims to equip WHO member states with the right 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.

During the launch of the WHO Guidelines for the pharmacological treatment of hypertension in adults on August 25, 2021, ISN’s immediate Past President, Professor Vivekanand Jha, explained the strong interconnection between kidney diseases and hypertension and the importance of the WHO guidelines to manage and treat the condition.

The WHO guidelines provide concrete recommendations to address the increasing burden of hypertension with specific relevance to low- and middle-income countries. High blood pressure is widespread, with between 6-9 out of every ten people developing high blood pressure during their lifetime. Hypertension can cause kidney disease, worsen pre-existing kidney diseases, and increase the risk of heart disease and stroke, the leading cause of death and disability worldwide.

With new data emerging linking climate change and kidney disease,  the ISN appreciated the opportunity to respond to the consultation on the draft COP26 Special Report on Climate Change and Health, ‘The Health Argument for Climate Action.’

New data demonstrates that climate change and its consequences, notably the increased frequency and intensity of heatwaves, rising temperatures, and the spread of parasitic and tropical diseases, can increase the risk factors associated with kidney disease. Therefore, the ISN called on leaders at COP26 to commit to building climate-resilient and sustainable health systems, secure global net-zero by 2050, and pursue the Paris Agreement’s goal to limit global temperature increase to 1.5 degrees.

The ISN urged leaders to recognize the vulnerability of patients with kidney diseases and people working in hot temperatures and to use these measures to protect their communities from the devastating consequences of climate change.

Presenting remotely, Professor Robyn Langham, member of the ISN’s Advocacy Working Group and ISN co-chair of the Joint Steering Committee-WKD, delivered a statement and videoPreventing the Next Pandemic: the Case for Investing in Circulatory Health” at the 72nd World Health Organization Regional Committee for the Western Pacific, held in Himeji, Japan, from October 25-29, 2021.

The COVID-19 pandemic has had a catastrophic impact on people suffering from kidney disease who are at greater risk of severe consequences and death if they catch the virus. Simultaneously, the burden of COVID-19 and the measures necessary to retard its progression have significantly impacted health systems and patients’ ability to access vital medical care such as dialysis.

The ISN called on WHO member states to mitigate the impact of any future pandemic on kidney patients by preventing, screening, and treating for circulatory conditions, recommending increased investment in targeted policies to tackle cardiovascular disease and non-communicable disease risk factors, and the inclusion of indicators on circulatory disease prevalence, comorbidities, and risk factors into measures of pandemic readiness, resilience, and response.

The ISN welcomed the opportunity to provide feedback on the WHO Discussion Paper: “Draft recommendations to strengthen and monitor diabetes responses within national noncommunicable disease programmes.”

Given the strong causal relationship between diabetes and kidney failure and the significant mortality impact and economic consequences of diabetes, the ISN encouraged WHO Member States to increase health system capacity to detect, diagnose, and manage diabetes as well as to scale-up health promotion efforts to prevent diabetes, particularly among young people.

Diabetes-related mortality continues to rise,  and the number of people living with diabetes has tripled over the last 20 years, with over 500 million people affected worldwide. Efforts to prevent and control diabetes can positively impact kidney health. In 2017, 1.2 million people died directly from chronic kidney disease, an increase of 34% since 2007. One-third of these deaths were from diabetic kidney disease, which has increased by 23% for type 1 and 41% for type 2 diabetes in the last decade.

The ISN hosted the European Kidney Health Alliance’s (EKHA) Board of Directors at its headquarters in Brussels on September 21-22, 2021. EKHA leaders met virtually with the members of the European Parliament Group for Kidney Health (MEP) to discuss the role of the European Union in promoting kidney health and improving access to kidney disease treatment in low- and middle-income countries through its Africa-EU and Africa, Caribbean, and Pacific (ACP) partnerships.

With the future EU/ACP agreement set to enter into force on December 1, committing both parties to promote universal health coverage and access to safe, effective, quality-controlled, and affordable medicines and vaccines, the ISN called on the EU to help ensure that kidney health becomes a priority in these efforts.

The EKHA urged the MEP Group for Kidney Health to help develop forward-looking policy solutions within EU programs to better integrate and recognize chronic kidney disease. They recommended improving EU screening programs for kidneys and other noncommunicable diseases, promoting transplantation and home-based therapies to improve patients’ quality of life, and expanding research and funding for better innovation in kidney replacement therapy.

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