AdvocacyMission
As highlighted in ISN's mission, ISN strives to BRIDGE THE GAPS of available care through advocacy and collaborations with our global partners.
Advocacy is thus one of the strategic priorities of the International Society of Nephrology.
ISN is committed to Advocacy in order to facilitate the implementation of sustainable, equitable, ethical care for people with kidney disease in all regions and countries of the world.
ISN’s Advocacy objectives are threefold:
1) Ensure that kidney health is represented by a truly international voice on health-related global, regional and national policy developments
2) Provide input to health policy discussions relevant to improving kidney health e.g. surveillance and prevention, organ donation, transplantation and trafficking, renal replacement therapy access and others
3) Integrate kidney disease into the ongoing global debate and drive towards Universal Health Coverage (UHC) by leveraging kidney disease as a model for monitoring progress and achieving UHC
Strategy
- RESEARCH: ISN aims to produce key evidence and analysis to support its advocacy positions and calls for action.
- POLICY DEVELOPMENT: Based on the research results, ISN aims to make concrete policy proposals offering potential solutions and examples of best practice, in order to actively contribute to relevant policy action and debates.
- OUTREACH: ISN engages in targeted communication and public affairs activities in order to engage in the policy development process and generate awareness about kidney health.
MOBILISATION: ISN strives to build internal capacity and support among the healthcare community with a view to creating a network of kidney health supporters that are able to echo the need for improved kidney care to key decision-makers and stakeholders at global, regional and national level. - ALLIANCE BUILDING: ISN aims to build alliances with external stakeholders, including organisations from other disease areas, in order to strengthen mutual objectives and advocacy efforts vis-a-vis key decision-makers and relevant stakeholders.
Projects & Campaigns
EVIDENCE AND RESEARCH
ISN is building the case and producing the evidence to support policy asks and recommendations in the area of kidney disease:
- We have produced a Global Kidney Health Atlas with the aim to review the management of kidney disease globally and demonstrate the gaps in the capacity and competence of individual countries to deliver high quality kidney health care. Initial results of the Atlas were presented in July 2016 at the Global Kidney Health Summit in Vancouver. The final results of the Atlas were presented in April 2017 in occasion of ISN’s World Congress of Nephrology.
- Check out the main results of the AKI Global Snapshot, a far reaching cohort study providing brand new evidence on the burden of Acute Kidney Injury globally.
- SHARing Expertise to support the set-up of Renal Registries SHARing Expertise to support the set-up of Renal Registries (SharE-RR) The SharE-RR team will develop resources that kidney health advocates can use to assist the establishment or development of a renal registry in their countries.
RAISING AWARENESS
As part of our Advocacy activities, we are raising awareness about the pressing need to tackle kidney disease through far-reaching global campaigns aimed at increasing understanding about the burden of kidney disease with governments, international institutions, health professionals, patients and the general public. Here are our global awareness raising campaigns:
Campaign Priorities: 2018 UN High-Level Meeting on NCDs
World Kidney Day
The Lancet Kidney Campaign
Help us showcase our campaigns with your national and regional decision-makers!
ISN INITIATIVES
ISN is committed to curb deaths from kidney disease globally and to this end, we have developed two far-reaching Initiatives to tackle Chronic Kidney Disease (CKD) and Acute Kidney Injury (AKI).
ClosingTheGaps has developed a new A Roadmap for Closing Gaps in Care, Research and Policy with strong and clear policy recommendations to decision makers on how to improve kidney care and management globally.
0by25 aims to curb preventable deaths from AKI by 2025 by implementing globally applicable strategies that permit timely diagnosis and treatment of AKI for patients with potentially reversible diseases.
Stay tuned for more information!
Policies & Positions
ISN is getting involved in an increasing number of policy issues and activities including Universal Health Coverage (UHC), Non Communicable Diseases and Sustainable Development Goals (SDGs), Ethical and Equitable Dialysis and Organ Donation & Transplantation.
UNIVERSAL HEALTH COVERAGE
One of the overarching objectives of ISN's advocacy strategy is to integrate kidney disease into the ongoing global debate and drive towards Universal Health Coverage (UHC). In this context, ISN seeks to propose kidney disease as a model for monitoring progress, achieving Universal Health Coverage and improving global health. To this end, ISN is actively engaging in the current WHO and UN discussions around the subject of UHC and the broader efforts to meet the UN’s Sustainable Development Goals (SDGs). ↓ show more
In December 2015, ISN signed up to the Global Coalition for Universal Health Coverage calling for more progress to deliver UHC, including in kidney care. The coalition includes the WHO, World Bank Group, Rockefeller Foundation and hundreds of leading NGOs, healthcare organisations and academic institutions.
In December 2015, ISN responded to a UN consultation on the tracer indicators to be used in tracking UHC, one of the key health-related targets of the SDGs. In the consultation, ISN underlined the following key recommendations:
- ISN supports the use of tracer indicators as an appropriate and effective way of monitoring progress towards the Universal Health Coverage (UHC) target.
- In order to provide a good indication of the ‘health’ of the healthcare system, ISN also recommends that the defined package of tracer interventions should cover the full spectrum of health services that should be made available to the population. This package should include interventions targeted at disease prevention, diagnosis, treatment and rehabilitation.
- Kidney disease, a non-communicable disease (NCD) with a growing global burden, particularly in low and middle-income countries (LMICs), is a good example of how such a package of interventions might be developed. While the greatest health benefit will come from delivery of the whole package, limited resources may require prioritization of interventions and a phased approach to implementation in order to achieve scale-up over time.
ISN contribution to the UN consultation on the UHC tracer indicators is available here.
ISN will continue to actively seek to demonstrate the impact and relevance of kidney disease in achieving the UHC.
Stay tuned for more information!
SUSTAINABLE DEVELOPMENT GOALS
ISN strongly welcomes the inclusion of health and non-communicable diseases in the UN Agenda 2030 for Sustainable Development and its 17 Sustainable Development and Sustainable Development Goals. At the same time, we also call for heightened awareness of the clinical, economic and social burdens of kidney disease, which are at present frequently underestimated. ↓ show more
ISN approves, in particular, the holistic approach of the Agenda 2030 and the Sustainable Development Goals (SDGs) which promises to have a positive impact on kidney disease globally. We support a system-wide approach to tackle the problem of non-communicable disease such as kidney disease. The reason being that many structural factors including poverty, education, nutrition, gender inequality, substance abuse, lack of access to primary care and overall health all directly increase the risk of kidney disease.
For more information about ISN's position on the role and contribution of SDGs and Agenda 2030 in the fight against kidney disease, please view ISN's statement at the 66th Session of the WHO Regional Committee for Europe in September 2016.
More information about the relevance of the SDGs to kidney disease can also be read in the recent contribution of Dr. Valerie Luyckx on this topic in The Lancet Kidney Campaign.
We hope that the international community and member states will demonstrate strong progress in the implementation of the UN Agenda 2030 framework as a successful model to be used as inspiration and impetus for other regions of the world.
Stay tuned for more information!
NON COMMUNICABLE DISEASES
Kidney disease is one of the “neglected” NCDs in spite of the clear indication that across the world deaths from kidney disease are increasing globally as highlighted by a systematic analysis of global mortality for the Global Burden of Disease study.
Kidney disease does indeed not currently feature among the 4 major non-communicable diseases (NCDs) specifically targeted by the World Health Organisation (WHO) or other relevant international organisations.
ISN recognises the current status as a challenge and therefore focuses its efforts on building a stronger profile and understanding of kidney disease and identifying specific opportunities where ISN can make a relevant and valuable contribution to the ongoing work of the WHO and other related international organisations (e.g. the UN).
Through these efforts, ISN hopes to demonstrate the importance of acting on kidney disease – as a major NCD and as an amplifier of other NCDs, such as diabetes and cardiovascular disease (CVD). ↓ show more
As a first step in this direction, in June 2016, ISN joined the World Heart Federation and other leading health organizations in signing the Mexico Declaration on Circulatory Health for All People which calls on international organisations such as WHO and national governments to ensure better prevention, diagnosis and management of circulatory disease, its risk factors and other related non-communicable diseases, including kidney disease. In July 2017, ISN joined the Global Coalition for Circulatory Health which brings together international, regional and national stakeholders in circulatory health to drive the urgent action needed to combat heart disease and stroke, in preparation for the Third United Nations High-Level Meeting on Noncommunicable Diseases (NCDs) in 2018.
In September 2016, ISN was invited to participate to a WHO stakeholder consultation on the revision of Appendix 3 of the WHO Global NCD Action Plan 2013-2020. In the consultation response, ISN stressed the importance of kidney disease as a ’neglected’ disease which raises important public health concerns worldwide and should be put high on the agenda. ISN has also brought the attention of the international healthcare community to the underestimated link between diabetes, cardiovascular diseases and kidney disease by recommending early detection of kidney disease in diabetes and CVD patients in order to improve outcomes.
ISN's response to WHO Appendix 3 consultation is available here.
Stay tuned for more information!
Obesity
Obesity increases the risk for a variety of chronic conditions, but the important role it plays in the development and progression of kidney disease is rarely acknowledged. By adopting a healthy diet, increasing physical activity, ensuring healthy fluid intake and getting adequate sleep, individuals can prevent obesity and many other possible risk factors of CKD. The fight against obesity however cannot rely entirely on personal responsibility. Governments, healthcare professionals, the private sector, educators and community leaders must acknowledge the magnitude of the burden of obesity and kidney disease and implement the following population based policies and strategies to complement individual efforts.
On World Kidney Day 2017, ISN together with the International Federation of Kidney Foundations and the World Obesity Federation published a joint position statement. The position provides facts on the important role obesity plays in the development and progression of kidney disease. The position also illustrates joint risk factors shared by obese and kidney disease patients such as cardiovascular disease, diabetes and hypertension. Hence the policy measures presented in the final part of the position provide pertinent strategies for policy-makers to tackle the root causes of kidney disease and obesity as well as of a variety of other chronic diseases in a cost-effective way.
You can download the position paper HERE
ORGAN DONATION AND TRANSPLANTATION
In December 2006, concerned by the ongoing problems of international organ trafficking and the global shortage of organs for transplantation, representatives from the International Society of Nephrology met with representatives of The Transplantation Society and conceived the idea of developing a formal Declaration that would serve to inspire and unite all those engaged in combating unethical practices in organ transplantation.
This debate culminated with the Declaration of Istanbul on Organ Trafficking and Transplant Tourism.
ISN continues to strive to raise awareness about the challenges and large differences between countries in access to suitable and equitable renal replacement therapy including transplantation and in the level of safety, quality, efficacy of donation and transplantation of human cells, tissues and organs.
Stay tuned for more information!
Publications
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White Paper for Circulatory Health |
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A call to action on Kidney Disease: |
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Kidney disease in women. A call to action |
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Global kidney policy forum series: |
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Kidney disease and obesity |
News and Events
October 2018
UN High-Level Meeting 2018: targeted action on kidney disease
September 2018
United Nations General Assembly
ISN attends the UN High Level Meeting on NCDs 2018
On 27th September 2018, ISN attended the United Nations High Level Meeting on Non-Communicable Diseases (NCDs) in New York. The meeting was attended by the Heads of states and Health ministers from over 70 countries worldwide. ISN was the only kidney organisation invited to attend the meeting. You can read the ISN’s official statement delivered at the meeting here. For additional information also see: ISN at UN General Assembly to highlight the cause of kidney patients
ISN launches the White Paper for Circulatory Health
On Tuesday 25th September ISN launched the White Paper for Circulatory Health calling for an integrated approach to disease management which brings kidney disease at the core of circulatory health. ISN was one of the 4 co-organisers (together with the World Heart Federation, World Hypertension League, World Stroke Federation) of the high level event which marked the launch of the paper. Key note speakers included EU Commissioner for Health and Food Safety, Vytenis Andriukaitis and Health Minister for Jamaica, Dr the Hon. Christopher Tufton strongly endorsed the White Paper and called for its implementation by member states. You can read the main asks of the White Paper for Circulatory Health here.
EU Commissioner for Health and Food
Safety, Vytenis Andriukaitis speaking
at the launch of the White Paper
on Circulatory Health
ISN at UN General Assembly to highlight the cause of kidney patients
August 2018
Update to the Declaration of Istanbul on Organ Trafficking and Transplant Tourism
Statement of Concern - Political Declaration, Third UN High-Level Meeting on NCDs
July 2018
ISN attends the UN Interactive Hearing on NCDs
On 5th July 2018, ISN was invited to attend and speak at the UN Interactive Hearing on non-communicable diseases (NCDs), as part of the UN preparations to the High Level Meeting on NCDs. The issue of how to tackle NCDs was discussed by representatives of national governments and the WHO, as well as stakeholders from the health civil society, including ISN. At the meeting, ISN stressed the need to ensure that member states implement a comprehensive and integrated approach to disease management which leaves no disease behind. You can read ISN’s official statement here.
June 2018
The under-recognized epidemic: Worldwide, over 850 million people suffer from kidney diseases
May 2018
Contributing to this year’s World Health Assembly
ISN presence at the World Health Assembly
April 2018
ISN joins NCD Alliance as a full member
March 2018
ISN launches advocacy campaign to address kidney disease as a priority
ISN contributes to new technical package for integrated NCD management in primary health care
On March 7, the updated HEARTS package was published. It was developed under the auspices of the Global Hearts Initiative, led by WHO and the US Centers for Disease Control and Prevention.
ISN, a partner of the broader Global Hearts Initiative, was actively engaged and consulted in the updating process. The package comprises six modules and an implementation guide. This package supports Ministries of Health to strengthen management of cardio-vascular diseases (CVD) and common co-morbidities such as kidney disease (KD) in primary health care settings. The practical, step-by step modules are supported by an overarching technical document that provides a rationale and framework for this integrated approach to the management of NCDs.
To learn more about the HEARTS initiative and to access the updated HEARTS package, please go to: http://www.who.int/cardiovascular_diseases/hearts/en/
ISN encourages its members and the nephrology community as a whole to champion the use and implementation of the HEARTS package at national level to improve CVD management and to prevent avoidable deaths from CVD and KD.
February 2018
ISN publishes summary in support of DICG concerns on kidney transplant pairing scheme
The summary reiterates the key points of a recent position paper of the Declaration of Istanbul Custodian Group (DICG) on the Global Kidney Exchange (GKE) Program created by the Alliance for Paired Kidney Donation. While esteemed well-intentioned, ISN and the DICG warn of the program's potential to create a new category of international organ trafficking and encourage health authorities in both high and lower and middle-income countries to prioritise other means of increasing deceased and living related donation instead, as well as to develop domestic kidney paired donation programs, and generally to improve access to transplantation in their countries. You can access the ISN summary here.
January 2018
ISN continues official relations with WHO for 3 more years
Last week, the World Health Organization (WHO) approved our proposed three-year joint work plan and prolonged our privileged status as a non-state actor in official relations with WHO. Over the next three years, we will collaborate with the WHO to provide technical assistance to low-and middle-income countries wanting to expand end-stage kidney disease care. We will promote the uptake of the technical HEARTS package, gather evidence on chronic kidney disease of unknown origin and raise the profile of the second edition of the Global Kidney Health Atlas.
"We are delighted to have these opportunities to advance global kidney care." said ISN Advocacy Portfolio Director Adeera Levin on the occasion.
November 2017
Special Session of the WHO Executive Board
ISN took part in the WHO Special Session of the WHO Executive Board to discuss the first draft of General Programme of Work 2019-2023. ISN's main suggestions to the WHO's proposed general programme of work are available here.
WHO regional office for the Western Pacific
During the meeting of the WHO regional office for the Western Pacific, held in Brisbane, Australia, ISN presented a written statement on the Regional Action Plan on Health Promotion in the Sustainable Development Goals (2018–2030) to highlight the importance of mobilizing intersectoral, whole-of-government and whole-of-society actions that leave no one behind and secure the prerequisites for health.
In this context, ISN also called on Member States to recognize the immense burden of kidney disease worldwide, and expressed its hopes that such actions promise to have a positive impact on kidney disease globally.
October 2017
Global Conference on NCDs
During the Global Conference on NCDs in Montevideo in October 2017, ISN showcased its Saving Young Lives project as a cost-effective intervention to reduce the burden of premature death from NCDs in line with the UN Sustainable Development Goals (SDG 3.4). Four hundred participants, including heads of state of Argentina, Chile, Morocco, Paraguay, Uruguay, Zimbabwe, saw the adoption of the Montevideo Roadmap 2018-2030 on NCDs as a Sustainable Development priority.
In its reactions to the roadmap, ISN has called for more coordinated and coherent action from all policy sectors and criticized the lack of bold commitment and concrete suggestions on how to achieve SDG 3.4.
September 2017
WHO regional committee for Europe
At the annual session of the WHO regional committee for Europe in Budapest, Hungary, ISN collaborated with the World Heart Federation (WHF), as well as with World Cancer Research Fund International, European Public Health Alliance and WHF on a joint oral statement on the risk of unhealthy diets for NCDs such as kidney disease. The statement is available here.
Regional meeting of the Pan American Health Organization (PAHO)
The regional meeting of the Pan American Health Organization (PAHO) in Washington was particularly relevant for ISN’s work on Chronic Kidney Disease of Unknown Origin (CKDu) with a session of the meeting dedicated to this alarming global health threat. ISN contributed to the discussion with a written statement endorsing the actions recommended by PAHO and calling on Member States, governments and institutions to draw more attention to CKDu, increase research and funds, and promote advocacy and awareness.
April 2017
ISN Global Kidney Policy Forum, 21 April 2017, World Congress of Nephrology, Mexico City
In partnership with the Mexican Ministry of Health and with the participation of The Lancet, on 21 April 2017, ISN brought together high-level decision-makers and stakeholders to address the burden of kidney disease in the Americas region and share strategies for prevention and improved management of the disease at both the regional and global level. Participants included representatives from national health ministries, international and regional health organisations, key opinion leaders, and representatives of the wider health community.
The main outcome of the Policy Forum for the endorsement by participants the Conclusions of Mexico City, a 12-point set of measurable actions to curb the burden of kidney disease worldwide, specifically focusing on Latin America. The Conclusions are available in English as well and they call for key measures aimed at developing and implementing integrated non-communicable disease programs addressing chronic kidney disease (CKD) risk factors; implementing and support surveillance mechanisms such as robust national and regional registries for acute kidney injury, CKD and end-stage kidney disease, and crucially ensuring just and equitable access to kidney disease care including dialysis and transplantation.
For more infomation about the outcome of the first Policy Forum, please click here.
You can also download the Global Kidney Policy Forum brochure in English here and in Spanish The Lancet Kidney Campaign
The Global Kidney Policy Forum will be the first in a series of ISN Policy Forum meetings that will take place at regular intervals. The unique format will provide an opportunity to bring an international viewpoint on key issues related to the prevention and management of kidney care disease, which impact a particular country or region. The meeting will culminate in a clear call for action to national, regional and global policy makers.
The second Global Kidney Policy Forum is going to take place in Melbourne on Friday, 12 April 2019. Stay tuned for more information!
March 2017
New study finds: Cost of kidney dialysis poses ethical dilemma in sub-Saharan Africa
A recent article co-authored by ISN Associate Dr. Valerie A. Luyckx summarizes the findings of a systematic literature review to dialysis care in Sub-Saharan Africa. The article finds that access to dialysis for end-stage kidney disease is limited by insufficient infrastructure and catastrophic out-of-pocket costs. This leads to most patients either remaining undiagnosed or untreated. The majority of those who manage to pull together the money needed to start dialysis, discontinue quickly within the first weeks, most likely indebted and fatally ill. Equitable and sustainable strategies to manage individuals with ESKD in Sub-Saharan Africa are urgently needed.
Please read the full article here.
World Kidney Day 2017 - Joint position on obesity and kidney disease with World Obesity Federation
February 2017
Ethical dialysis: New article presents preliminary recommendations to guide practice and policy
In a new article ISN's Ethical Dialysis Task Force adresses the lack of ethical analysis and guidance available to decision makers on the dilemmas linked to renal-replacement therapy. These include how to promote patients' best interests; increase access to dialysis while maintaining procedural and distributive justice; minimise the influence of financial incentives and competing interests; ensure quality of care in service delivery and access to non-dialytic supportive care when needed; minimise the financial burden on patients and health-care system; and protect the interests of vulnerable groups during crisis situations.
Please access the full article.
ISN DICG at Vatican City Summit on organ trafficking and transplant tourism
January 2017
ISN speaks at the first 2017 meeting of the World Health Organisation’s Executive Board
In its capacity as a non-state actor in formal ‘official relations’ with WHO, ISN attended the 140th World Health Organization (WHO) Executive Board meeting in Geneva which took place from 23 January – 1 February 2017. ISN made two statements commenting on WHO's ongoing processes, relevant to ISN’s advocacy work, namely the WHO’s action plan on non-communicable diseases and the progress made with regards to health in the Sustainable Development Goals agenda 2030.Both statements underlined the need to address the global burden of kidney disease and adopt a holistic and service integrated approach to tackling kidney disease throughout the entire life course.
For more information on the 140th session of the Executive Board, please see: http://www.who.int/mediacentre/events/2017/eb140/en/
To read ISN statements, please go to: https://extranet.who.int/nonstateactorsstatements/meetingoutline/7
December 2016
ISN marks Universal Health Coverage Day!
On 12 December 2017, ISN will mark Universal Health Coverage Day (UHC). ISN believes that everyone has the right to quality health care without suffering financial hardship and calls on governments to integrate strategies for prevention, early detection and treatment of kidney disease into their efforts to achieve UHC and to ensure access to essential care to delay the progression of kidney disease. For more information about UHC Day, please view: http://universalhealthcoverageday.org/welcome/
November 2016
The ISN Meeting on CKDu, 20 November 2016, Conference Chicago University Center, Chicago
In order to support the creation of a systematic, nephrology-based approach to investigating the epidemiology and etiology of CKDu, ISN brought together key opinion leaders and experts with a view to examine what is currently known in the area of CKDu from published data, to review the ongoing work and frameworks proposed in specific research areas and subsequently highlight the scientific 'unknowns' of CKDu and the next steps to tackle them appropriately.
Stay tuned for more information on the outcome and key output of the meeting!
October 2016
Leading global organisations partner with Lancet Kidney Campaign
ISN support World Obesity Day!
Global Burden of Disease Study 2015 outlines chronic kidney disease as a cause of death worldwide
September 2016
ISN contributes to WHO stakeholder consultation on tackling NCDs
DICG activities at the TTS congress in Hong Kong
ISN participates in high-level WHO meeting in Copenhagen
July 2016
Global experts and leaders devise a new blueprint for kidney care
Coming up: The ISN Global Kidney Health Summit
June 2016
ISN signs the Mexico Declaration on Circulatory Health for All People
May 2016
The Lancet Kidney Campaign puts the spotlight on kidney health policy
April 2016
ISN to launch the Global Kidney Health Atlas
December 2015
Team
MEET OUR ADVOCACY TEAM!
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Advocacy working group |
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ADEERA ChAir |
Valerie co-chair |
ROBYN member |
DONAL member |
Mohammed Benghanem Gharbi MEMBER |
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ADVOCACY STAFF |
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LUISA STRANI Advocacy director |
ANNE HRADSKY ADVOCACY MANAGER |
tara riva Policy |
ANASTASIA GALIBINA WKD CAMPAIGN ASSISTANT |
 Evi Palaiologou advocacy |
Contact us for more information about ISN's Advocacy activities.