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Bridging the Gaps – Your New, ISN Advocacy Quarterly Newsletter

BRIDGING THE GAPS: ISN ADVOCACY TACKLES THE GLOBAL BURDEN OF KIDNEY DISEASE

Welcome, members and allies, to the inaugural edition of Bridging the Gaps, the ISN’s quarterly update on how we’re advocating and collaborating with partners to tackle the global burden of kidney disease.
As you know, about 850 million people worldwide have some sort of kidney disease. Kidney diseases are inextricably linked with the increasing global burden of NCDs – both as a cause and a consequence of other major diseases, such as heart disease and diabetes. The upcoming challenges related to climate change are further threatening kidney health.

 

We need to work together as a community to address this rapidly growing burden. A lot of efforts are already underway at national, regional and global levels. ISN’s 12 Recommendations to Global Kidney Health provide a clear framework to guide future efforts.

 

We need to do more, however, and look forward to collaborating with you in this endeavour.

 

Sadly, we will miss the leadership and support of our dear colleague and friend, Professor Donal O’Donoghue, who was the Chair of the ISNAdvocacy Working Group when he passed away earlier this month. He was tireless in his advocacy to address inequities in kidney care, and would want us to continue to do everything we need to in order to promote best possible care for our patients.

 

Best,

Vivekanand Jha

ISN is saddened to announce the death of Professor Donal O’Donoghue, who passed away on 3 January 2021 having become unwell with COVID-19 in mid-December.

Professor O’Donoghue qualified in physiology and medicine from Manchester and trained in Internal Medicine and Nephrology in the East Midlands, Paris and in Edinburgh.

Professor O’Donoghue was the Chair of the ISN Advocacy Working Group and a tireless advocate for advancing global kidney health. He was also the inaugural president of the multi-professional British Renal Society and served as National Director of Kidney Care at the Department of Health between 2007 and 2013. He was President of the Renal Association from 2016 until 2018 and in 2018 was awarded an OBE for services to kidney patients. He was the current Registrar at the Royal College of Physicians London.

ISN President Vivek Jha remembers, “Donal was a wonderful and passionate advocate for advancing global kidney care. We were privileged to benefit from his considerable skills and dedication, including in his role as chair of the ISN Advocacy Working Group. He leaves behind a large number of bereft colleagues and friends, and grateful patients. May he rest in peace.

The ISN mourns his loss and offers its sincerest condolences to his family, friends and colleagues.

Held as part of the virtual 2021 World Congress of Nephrology, the Global Kidney Policy Forum: Focus on North America and The Caribbean will feature Soumya Swaminathan, Chief Scientist at WHO,  and Sir George Alleyne, Director Emeritus, Pan American Health Organization (PAHO) as keynote speakers; with Richard Horton, Editor-in-Chief, The Lancet, moderating discussions.

Based on the ISN’s 12 Recommendations to Global Kidney Health, the Forum brings together key decision-makers and stakeholders to address the burden of kidney diseases region and to share strategies for prevention and improved management of the disease at both the regional and global levels.

Registration details and further information about the WCN are available here.

The ISN’s Advocacy Director, Paul Laffin, speaking on behalf of our partners from the Global Coalition for Circulatory Health, addressed the WHO’s 73rd World Health Assembly (9-14 November 2020) to call on member states to:

  • Recognize multi-morbidity and co-morbidity as a growing worldwide public health concern that may affect over 1.7 billion people living with life threatening NCDs
  • Prioritize their inclusion between NCDs in the design and implementation of policies aiming at the prevention, early detection and treatment of all NCDs and their common risk factors via the delivery of health services that meet quality criteria
  • Maximize common efforts to create and reinforce health systems that deliver affordable, people-centered, integrated, multi-sectoral and comprehensive NCD responses

The Dialysis Outcomes and Practice Patterns Study (DOPPS) Program at Arbor Research Collaborative for Health in Michigan, United States, and the ISN are conducting a survey on the impact of the COVID-19 pandemic on the care of patients undergoing chronic dialysis for the treatment of kidney failure.

People with kidney diseases are particularly vulnerable to the health threat from COVID-19, either directly from the risk of infection or indirectly from disruption to life-sustaining services, the survey’s findings will be used to inform the dialysis community and raise awareness on international practices and challenges faced during the COVID-19 pandemic.

The SharE-RR (SHARing Expertise to support the set-up of Renal Registries) project presented three 2-hour webinars over three weeks in September and October 2020 to lay the groundwork for development of renal registries.

Three countries presented the history and current status of registries in their home countries: Bolivia, Saudi Arabia, and Nigeria; registry experts from Uruguay, France, South Africa, and Iran gave talks on governance, survival analysis, and local experiences.

Professor Ifeoma Ulasi, member of the ISN Advocacy Working Group, participated in the WHO Expert and Stakeholder Consultation on the Development of the WHO Global Diabetes Compact on 14 October 2020. Having emphasized at this forum that diabetes mellitus is the commonest cause of chronic kidney disease, we were pleased to note the WHO Director General’s subsequent recognition (statement at 0:46 in this video) that diabetes is “a major cause of kidney disease.”

With the Global Diabetes Compact, a comprehensive and inclusive tool to support countries in implementing effective programmes for the prevention and management of diabetes, scheduled for launch on World Diabetes Day 2021, we look forward to working with partners to tackle such co and multi-morbidities.

The ISN Community Film Event aims to raise awareness of the importance of our kidneys and the impact of CKD, effective symptom management and patient empowerment. This year, the ISN Community Film Event will run in collaboration with the 2021 WKD Campaign “Living Well with Kidney Disease”.

The ISN Community Film Event at Virtual WCN 2021 in April will without doubt include films about people doing exactly that despite the many challenges they face. This year for the first time all films submitted will be added to the World Kidney Day Event Map, joining all the other WKD activities and help raise awareness to a truly global audience.

With almost 200 million people at risk of catastrophic personal expenditure in ACP countries as a result of kidney disease, outnumbering any other disease group, ensuring Universal Health Coverage (UHC) is essential for patients living with, or at risk of kidney diseases to access best-practice care and treatment.

As such, and with the current partnership agreement between the EU and the ACP states having been extended until December 2021 as negotiations on its successor have taken longer than planned, the ISN wrote to both sets of negotiators to indicate our support for “UHC (universal health care) as an opportunity for substantial gains to patients living with (or at risk of) kidney diseases.”

As the draft agreement needs to be approved by the European Parliament, we will be working with partners to ensure that the final version reflects ISN’s interests.

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