ISN Advocacy Newsletter – Bridging the Gaps – March 2023
Learn About How the ISN is Collaborating to Promote Kidney Care on the Global Health Agenda in “Bridging the Gaps”
Welcome members and allies to Bridging the Gaps, the ISN’s quarterly update on how we advocate and collaborate with patients and partners to address the global burden of kidney disease.
With the World Health Organization’s (WHO) Executive Board (EB) and Youth Council meetings held in January, the launch of the “Abidjan Declaration,” roundtable discussions on kidney health in Europe, and the annual World Kidney Day campaign culminating on March 9, the last few months have been highly productive for ISN’s advocacy efforts.
At WHO’s 152nd EB, we called on member states to strengthen preparedness for and responses to health emergencies, accelerate progress toward Universal Health Coverage and improve the prevention of kidney disease with routine assessments of kidney functions.
A few days before the EB meeting, ISN representative Marina Weinstein was part of the Inaugural Meeting of the WHO Youth Council, where she will serve for two years. In this role, she will contribute her nephrology expertise and make the most of this opportunity to raise the profile of kidney disease with the WHO Director-General and other senior WHO leaders, designing and incubating new initiatives and expanding existing WHO youth engagement initiatives.
Our efforts to raise awareness of kidney disease do not end here, as other major international events are already in the pipeline for the next few months. On March 30, 2023, we will host the ISN’s annual Professor Donal O’Donoghue Global Kidney Policy Forum. This will lead beautifully into the 2023 World Congress of Nephrology (WCN’23) in Bangkok, Thailand, reinvigorating “Recommendations to Global Kidney Health” in the region six years after its original launch in Mexico.
Finally, with the support of Devex, we will host our first standalone event in Geneva to coincide with the World Health Assembly on May 24, 2023. We aim to elevate kidney disease on the global health agenda and beat the drum about prioritizing it in international and national health policies.
Our goals are challenging! Although over 850 million people worldwide live with some form of kidney disease, it is still the ‘silent killer’ and therefore does not currently dominate political or public discourse. Nevertheless, I am confident that with your continued help, we can jointly deliver a future where everybody has equitable access to sustainable kidney health.
ISN’s Advocacy Director, Anne Hradsky, is available to discuss how best we can do this; please do reach out to her.
Agnes Fogo
ISN President
The “Professor Donal O’Donoghue, Global Kidney Policy Forum: Focus on Oceania and South East Asia” will be held on March 30 from 8 a.m. to 12.10 p.m. local time at the World Congress of Nephrology 2023.
The meeting brings together decision-makers and stakeholders, including WHO representatives, patients, and internationally renowned nephrologists. Discover the complete Global Kidney Policy Forum program here.
Speakers will review the burden of kidney disease in the ISN Oceania and South East Asia Region and share strategies for preventing and improving kidney care at regional and global levels. Highlights include:
- Bente Mikkelsen on the WHO’s work on NCDs and kidney diseases
- Bill Wang on the patient perspective
- Adrien Liew on emergency preparedness
- Sanjib Sharma on migrant workers returning home with AKI/CKD
- Khin Phyu Pyar on home dialysis therapies in Myanmar
- Katherine Barraclough on green nephrology
The ISN invites all WCN’23 delegates to attend the Global Kidney Policy Forum in person in Bangkok, Thailand, to renew their commitment to the updated “Recommendations to Global Kidney Health.”
The GKPF will also be broadcast online as an open-access session. Attending the online session requires no congress registration, but you must create a profile in the WCN’23 portal and register.
The ISN submitted three statements supporting global kidney health when it participated in the 152nd session of the World Health Organization’s Executive Board from January 30 to February 7, 2023. This annual meeting gathers WHO executive board members at the start of each year to agree on resolutions for consideration by the World Health Assembly in May.
Working alongside members of the Global Coalition for Circulatory Health (GCCH) the ISN co-signed a statement on strengthening WHO preparedness for and response to health emergencies calling on member states to prioritize ongoing prevention, screening, and treatment for circulatory conditions in national COVID-19 response and recovery plans.
The ISN submitted an additional joint statement with the GCCH, highlighting the importance of accelerating progress toward Universal Health Coverage through robust and well-financed primary healthcare systems.
Thirdly, in an individual statement on the draft updated menu of policy options and cost-effective interventions for the prevention and control of noncommunicable diseases, the ISN exhorted the WHO and its member states to improve the prevention of kidney disease by routinely assessing kidney function and albuminuria in people with cardiovascular disease, hypertension and diabetes to favor early diagnosis and treatment.
As a non-state actor in official relations with the WHO, and the world’s only international kidney society, the ISN continues to make its voice count in promoting kidney health worldwide.
An editorial by ISN President Agnes Fogo has been published in the winter edition of the Journal of the American Association of Physicians of Indian Origin (JAAPI).
Read the open-access article here.
“Kidney Disease: The Silent Killer That Needs Our Voice” includes the most recent data on the burden of kidney disease, raising awareness of how its acceleration poses significant healthcare challenges for governments, particularly in low and middle-income countries.
As the only kidney society in official relations with the WHO, the ISN works to address the insufficient political and public discourse on kidney disease and promote prevention and management practices for global implementation.
Members of the African Association of Nephrology (AFRAN) and the ISN Advocacy team collaborated for over a year to finalize the declaration designed to help advocate for better kidney health in Africa.
Access the declaration here.
“The Abidjan Declaration in Support of Kidney Care in the African Continent” was launched during the AFRAN’s 2023 congress in February in Cairo, Egypt.
Kidney health advocates will use the document to engage with national governments and international organizations to make clear the need to prioritize the prevention, detection and treatment of kidney disease in health policies.
The ISN continues to explore new partnership possibilities to advance kidney health on the global NCD agenda and highlight the clinical, economic and social burdens of kidney disease in low and middle-income countries.
By Marina Wainstein, Young Nephrologists Committee chair and ISN Advocacy Working Group member
From January 27 to 30, the World Health Organization in Geneva hosted the inaugural meeting of the WHO Youth Council.
The council was created as a WHO network for stakeholders to amplify young people’s voices and experiences and harness and expand our expertise, energy and ideas to promote public health.
Twenty-two global health and non-health youth organizations, including the ISN and a nominated representative, were selected to join the council.
Organizations serve a two-year mandate, after which new organizations are invited to join the council, ensuring continued inclusivity, diversity and fairness. The ultimate goal of the Youth Council is to raise the profile of youth contributions to public health at every level by driving a global advocacy initiative that is entirely designed and conceived by young people.
On the first day, Dr. Tedros, director-general of the WHO, reminded us that kindness must be at the heart of everything we do and that our mindset – our willingness to re-frame questions and challenges –will ultimately determine the fate of our battles.
Later, the WHO Communications team, led by Gabby Stern, stepped in to welcome and walk us through how the WHO frames and delivers messages, announcements, calls to action and initiatives to its member states and the public.
After lunch at the WHO cafeteria, we mingled with various WHO departments interested in interacting with us as a council and as individual organizations. I spoke at length with the WHO’s Primary Healthcare and Compassionate Leadership department representative about the importance of incorporating kidney disease detection and screening in high-risk populations, citing the gaps established in the Global Kidney Health Atlas.
The representative from the Pharmaceutical Pricing department was similarly aware of the gaps in transplant affordability and essential blood pressure medications for people with kidney diseases in low and middle-income countries.
The second day brought inspiration in the form of our working group sessions. We split into four working groups and chose the following topics: universal health coverage (UHC), meaningful youth engagement (MYE), mental health (MH) and non-communicable diseases (NCDs).
Naturally, as a kidney doctor and advocate, I joined the NCD group alongside representatives from NCD Child, Cancer Europe, Commonwealth Youth Health Network, the Young Professionals Chronic Disease Network (YP-CDN) and Youth for Road Safety (YOUR). We decided to focus on the commercial determinants of health and their role in developing risk factors for NCDs.
We felt that young people were especially vulnerable to the marketing tactics of commercial giants promoting unhealthy fast food, soft drinks, tobacco, and alcohol, as well as the pervasive effect of digital hyperconnectivity on a sedentary lifestyle.
Over the next three days, we put together a proposal to produce a video that would show these effects from a young person’s perspective. The film would target young people and policymakers alike. It would call on young people to express and share their views on how they feel targeted and what they want from elected officials to stop this.
Additionally, we asked that the video be disseminated widely through WHO channels and presented at the next high-level meeting on NCDs. When we presented our pitch to Dr. Tedros on day three, he thanked us for choosing this topic, reassured us that we had full logistic and financial support from the WHO, and asked us to consider starting a grassroots campaign if the video achieved momentum. We now have one year to scope the literature, refine our message, and produce a video. Time to get to work!
The final day coincided with the first day of the WHO Executive Board meeting. We overheard Dr. Tedros’ opening speech with multiple mentions of the importance of youth voices in policymaking. He encouraged member states to interact with us in the afternoon, stating, “We don’t need to engage [young leaders]…we need to partner with them.” This cemented our feeling that our point of view was valued and is urgently needed if policies and initiatives to tackle major global health concerns are to succeed.
As I said goodbye to my 21 new friends, I thought of a phrase often used to disempower young people: “Youth is wasted on the young.” Well, not in this crowd! We have everything we need to create change: passion, empathy, resourcefulness, and the disinhibition to question authorities and shift paradigms. Hopefully, this new partnership is the platform we need to carry our issues forward and make a difference toward achieving #HealthforAll.
World Kidney Day (WKD) 2023 took place on March 9.
The ISN joins WKD organizers in thanking all who supported WKD activities this year to raise awareness of the impact of disastrous events on people living with kidney disease.
WKD’s success relies on the inspiring efforts of healthcare professionals, patients, supporters and the public. Have your experience featured on the WKD website and social media platforms!
- Send pictures of your activity in single files to info@worldkidneyday.org. They will be uploaded to the official WKD gallery.
- Fill in the event report form, which will appear on the WKD impact report page. Innovative and impactful activities described in reports will be added as “best ideas.”
- Use #WorldKidneyDay and tag @WorldKidneyDay on Facebook, LinkedIn, Instagram, Twitter, TikTok, and Youtube in posts about your activity and they will be shared on WKD channels.
The ISN thanks the official WKD 2023 global supporters: Alexion AstraZeneca Rare Disease, Astellas, AstraZeneca, Baxter, Bayer, Boehringer Ingelheim & Lilly, Calliditas Therapeutics, Chinook Therapeutics, CSL Vifor, Fresenius Kabi, Fresenius Medical Care, GSK, Janssen, Novartis, Otsuka Visterra, Sanofi, Travere Therapeutics, Vera Therapeutics, and Vertex Pharmaceuticals.
The ISN, in partnership with Devex, will host its first stand-alone event in Geneva on May 24, 2023, from 9:30 – 10:30 am CET, on the occasion of the 76th World Health Assembly (WHA).
This event aims to raise the profile of kidney disease as a global health priority and make a case for why it can no longer be ignored. With more than five million people dying each year due to a lack of access to kidney care, policymakers must recognize the importance of kidney disease as a global safety concern.
In addition, the event will draw attention to the financial burden of treating kidney disease and the need for increased prevention efforts and research investment, particularly for rare kidney diseases with limited treatment options.
The event will also address the link between kidney diseases and emerging global health threats, such as global warming and environmental change, emphasizing how climate change threatens to increase the incidence and prevalence of kidney disease, disrupt access to care, and widen kidney health inequity.
The event is supported by AstraZeneca and Novartis.
The webinar, “Pros and Cons of Public-Private Partnerships in Developing Dialysis Services in Resource-limited Settings,” took place on February 9, 2023.
Establishing dialysis services in any setting can be challenging especially when resources are limited. Public-private partnerships (PPP) are one method of achieving the capital investment required. This webinar focused on what such collaborations can accomplish and provided participants with an in-depth understanding of the benefits and potential drawbacks and how to mitigate these.
The webinar began with a description of a successful PPP in Georgia, followed by short presentations from the speakers who shared experiences from around the world and attempted to define a PPP while recognizing that a definition will differ by jurisdiction.
Key aspects discussed were standards, contracts, the scope of the service, ethics, management of uncontrolled growth, and third-party costs.
Participants submitted questions to the panel speakers, which were addressed at the end of the session.
The webinar is part of the ISN-WHO “Toolkit for Dialysis in Low-resource Settings” and complements the “ISN-WHO Framework for Developing Dialysis in Low-resource Settings.” The event was led by Simon Davies (UK), lead for the ISN-WHO Toolkit on dialysis.
As a European Kidney Health Alliance (EKHA) member, the ISN was pleased to partipate in the roundtable, “What Role for the EU in Tackling Inequities in Kidney Care?” hosted by EKHA at the European Parliament in Brussels on November 30, 2022. Vladimir Tesar, ISN Council and Executive Committee member, was there to represent the ISN.
Organized in collaboration with the Czech Society of Nephrology against the backdrop of the Czech Presidency of the Council of the European Union, the event brought high-level stakeholders together to discuss inequities in access to kidney transplantation and dialysis in Europe and identify policies to benefit kidney patients.
MEPs Kateřina Konečná, member of the Special Committee on the COVID-19 pandemic, and Ondřej Knotek, co-chair of the MEP Group for Kidney Health, urged for more attention to kidney disease within the European institutions. MEP Knotek commented, “There is a problem of awareness; MEPs voting on health issues need to know more about kidney disease.”
The meeting also shed light on the critical state of kidney care during emergencies, with a presentation from Dmytro Ivanov, president of the Ukrainian Association of Nephrologists.
The difficulties kidney patients face accessing medicine and dialysis in some European countries were also discussed. The European Kidney Patients’ Federation’s secretary, Jan van Cruchten, encouraged European institutions to work together to address this long-standing issue by creating “a medical program to give patients the right to get the medicine and treatment they need in all EU countries.”
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.
