ISN Advocacy Newsletter – Bridging the Gaps – December 2022Reema Parmar
Bringing Global Kidney Health to the Forefront: ISN Advocacy Update on WHO collaborations; WKD; Dialysis Roundtable; Patient Advocacy, and More
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.
I am writing to you at the end of another extremely productive quarter where our efforts to bridge the gaps in available kidney care were truly global in nature.
With kidney disease-related mortality continuing to increase yearly and projected to be the fifth leading cause of death by 2040, we called for the prioritization of kidney health during the second round of public hearings of the WHO’s intergovernmental negotiating body. We asked for a comprehensive approach to non-communicable disease prevention and control and access to healthcare for all at the last session of the WHO Regional Committee for the Western Pacific.
In an ongoing effort to bring kidney disease to the forefront of political discourse and to maximize the advocacy outreach of the 2023 World Kidney Day campaign, “Kidney Health for All – Preparing for the unexpected, protecting the vulnerable!” we produced a social media toolkit and translated all campaign materials into Arabic, Chinese, French, German, Italian, Persian, Portuguese, Russian, Spanish and Swahili.
Additionally, we raised awareness of the hardships people living with kidney disease face when considering parenthood with the webinar “Nuances in Nephrology: Parenthood With Advanced Kidney Disease or Transplantation.” Fiona Loud, member of the ISN Patient Liaison Advisory Group, and Liz Lighthouse, nephrologist and ISN Executive Committee member, engaged in an insightful discussion on the barriers and anxieties that often prevent men and women with kidney disease from pursuing parenthood.
Finally, in close partnership with the Declaration of Istanbul Custodian Group and The Transplantation Society, we finalized an anonymous survey for health professionals on their experiences providing care to patients who travel internationally for organ donation or transplantation and their views on collecting and reporting information on international travel for organ transplantation. This survey’s data will help us to best address the long-standing issue of illegal organ trafficking.
None of these initiatives are achievable without your ongoing support, so please do get in touch with our advocacy director, Anne Hradsky, to discuss how we can collaborate to help deliver a future where everybody has equitable access to sustainable kidney health. We look forward to hearing your ideas and learning from your experiences and wisdom.
The ISN submitted a video statement to the World Health Organisation’s intergovernmental negotiating body (INB) in support of global kidney health during pandemics, calling on member states to prioritize ongoing prevention, screening, and treatment for kidney disease in national COVID-19 response and recovery plans.
Delivered at the INB’s second round of public hearings held in September, the statement was recorded by Dr. Jorge Cerdá, current chair of the ISN Advocacy Working Group. It responded to the question: “Based on your experience with the COVID-19 pandemic, what do you believe should be addressed at the international level to better protect against future pandemics?”
This follows statements delivered at a pre-meeting of the 75th World Health Assembly (WHA): A joint statement submitted by the ISN and the Global Coalition for Circulatory Health (GCCH) to the WHO 150th Executive Board Meeting on the need to prioritize prevention, screening, and treatment for circulatory conditions in national COVID-19 response and recovery plans, and an ISN Statement on the need to prioritize kidney disease in public health emergency preparedness and response planning.
Building on these recent statements and the WHA’s decision to establish an intergovernmental negotiating body to draft and negotiate a WHO convention, agreement, or other international instrument on pandemic prevention, preparedness and response, the ISN reiterates its invitation to WHO Executive Board members and other key countries to meet and discuss how to help the INB negotiate an international instrument to grant future generations of kidney patients more security to in the face of a pandemic.
The ISN took part in the 73rd session of the WHO Regional Committee for the Western Pacific, which took place online and in person in Manila, the Philippines, from October 24 to 28, 2022.
As a non-state actor in official relations with the WHO, the ISN submitted two statements ahead of the meeting, calling for a comprehensive approach to preventing and controlling noncommunicable diseases (NCDs) and access to healthcare for all.
Home to more than a quarter of the world’s population, the Western Pacific region bears a disproportionate burden of NCDs. Though largely preventable, these diseases were responsible for 12 million deaths in 2019, of which 330 000 were due to chronic kidney disease.
Despite progress in the region, activities tackling NCDs still focus on the four major contributors: cancer, heart and lung diseases, and diabetes. They fail to consider the significant burden of other NCDs closely linked to these conditions.
Kidney disease is strongly associated with hypertension and diabetes. It is often overlooked and untreated due to a lack of early detection programs, resulting in inadequate management of hypertension and diabetes.
The ISN continues to call on the WHO and its member states to recognize the synergy between major and other noncommunicable diseases and the need for an integrated approach to tackling them, which leaves no patient behind.
Fiona Loud, policy director at Kidney Care UK and member of the ISN Patient Liaison Advisory Group, was a key speaker at the ISN webinar, “Nuances in Nephrology: Parenthood With Advanced Kidney Disease or Transplantation,” held in October.
Liz Lightstone, an ISN Executive Committee member whose research focuses on pregnancy in women with kidney disease, joined Ms. Loud to discuss the barriers and anxieties that often prevent men and women with kidney disease from pursuing parenthood. The webinar was moderated by Vincent Lee.
Despite improvements in obstetrical and perinatal care and advances in the understanding of risks related to pregnancy, people living with kidney disease still face many obstacles when considering parenthood and rarely find the support they need when planning pregnancy.
The webinar is part of a series of educational activities organized by the ISN based on the article “Parenthood with Kidney Failure: Answering Questions Patients Ask About Pregnancy,” published in Kidney International Reports earlier this year to help nephrologists guiding patients when planning for parenthood.
Building on the valuable efforts of all Patient Liaison Advisory Group members, recently joined by Mr. Ahmad Mussayev from Kazakhstan, the ISN continues working toward increased consideration of the needs and perspectives of those living with kidney disease in the design and implementation of health policies worldwide.
The 2023 World Kidney Day (2023) campaign, “Kidney Health for All – Preparing for the unexpected, supporting the vulnerable!” focuses on raising awareness of the impact disastrous events have on people living with kidney disease whose access to appropriate diagnostic services, treatment, and care may be hindered.
To facilitate the campaign’s reach, the WKD theme, call-to-action, logos, and 2023 visuals are available in different languages, including Arabic, Chinese (simple and traditional), French, German, Greek, Hindi, Italian, Persian, Portuguese, Russian, Spanish, and Swahili!
WKD’s online presence is crucial to raising awareness about kidney health! The WKD 2023 social media toolkit is now available. It contains information and resources to expand your social media campaign with tips on engaging your audience by joining the #ShowYourKidneys challenge, sharing stories on Facebook and Instagram, and other ideas.
The Declaration of Istanbul Custodian Group (DICG) participated in the 29th International Congress of The Transplantation Society (TTS 2022), which took place last September in Buenos Aires, Argentina.
The DICG presented a joint session with the TTS, “TTS-DICG on Organ Trade, Trafficking and Transplant Tourism: Government’s and Scientific Societies’ Responsibilities.” Key speakers included Elmi Muller, Sanjay Nagral and Efstratios Chatzixiros (WHO), alongside a roundtable of high-level panelists.
Registered attendees can view the recorded presentation by logging in here.
The DICG also hosted a half-day workshop at the congress, “Transplantation in the Context of Migration and Refugees.”
Watch a recording of the workshop here.
Key speakers at the workshop included Sylwia Gawronska (United Nations Office on Drugs and Crime), Beatriz Dominguez-Gil, Jolanta Malyszko, Antoine Barbari, Riadh Fadhil, Peter Stock, Alejandro Niño Murica, and Toby Coates.