Advocacy for Kidney Health in Low- and Middle-Income Countries: From Burden to Policy Action

Introduction

Over the years, the prevalence of chronic kidney disease (CKD) is increasing exponentially all over the world. High income countries have various programs in place for the management of CKD, whereas these programs are unfortunately nonexistent in low- and middle-income countries (LMICs).¹ There are multiple differences between resource rich countries and LMIC’s as far as CKD presentation, management, and its impact on the government of LMICs are concerned. CKD is initially silent, presents late, and its management entails significant economic burden in LMICs/low-income countries. Besides increasing financial allocation for various CKD programs and investments in health care infrastructure and therapeutics, effective advocacy for CKD is a major requirement to translate epidemiological burden to sustainable policy action in these countries. This is an important consideration because CKD not only competes with other noncommunicable diseases (NCDs) for governmental attention but also with communicable diseases in resource constrained nations.

Burden and Inequities in CKD in LMICs

Increasing incidence of diabetes, hypertension, and various other social determinants, such as unorganized urban infrastructure, poor sanitation, environmental pollution, and climate change are responsible for the staggering increase in CKD prevalence and incidence in LMICs.²

In India, with economic progress, noncommunicable diseases are on the rise with a consequent increase in CKD. A recent review revealed that the pooled prevalence of CKD from community-based studies in India was 13.24%. CKD prevalence among men was 14.80%, whereas among women, it was 13.51%. It was also higher in rural areas (15.34%) compared with urban settlements (10.65%).³ CKD is often diagnosed late as a significant number of patients in India have chronic interstitial nephritis and CKD of unknown origin. In a cross-sectional study, the prevalence of CKD in Kinshasa, the Democratic Republic of the Congo (a low-income country) was found to be 12.4%.⁴ In Africa, risk factors for CKD not only include noncommunicable diseases, but also infectious diseases, such as HIV, genetic factors, such as APOL1 variants and sickle cell trait, the use of traditional herbal medicines, gender bias, and low socioeconomic status.⁵ Multiple civil wars and population displacement increase the associated burden of CKD. In LMICs and low-income countries, where government sponsored dialysis is unavailable or inaccessible, the out-of-pocket expenditure is very high. Transplantation is also associated with many issues.^6,7 There is very little support from the government in developing initiatives facilitating the process of kidney transplantation. Peritoneal dialysis is rarely considered as a viable option of renal replacement therapy. Though the recent therapies that delay the progression of early-stage CKD are available, they are extremely expensive and often not covered by governmental insurance.⁸

Structural Barriers to CKD Care

There are multiple challenges in developing robust CKD care in resource constrained nations. Financial, infrastructural, and human resource restrictions are widely prevalent. The complexities and financial implications of CKD care can be mitigated to a certain extent by developing preventive strategies. Screening initiatives, by both government derived and nongovernmental organizations (NGOs), can help in early diagnosis and institution of care.⁹ There are many instances where NGOs have developed early detection programs in remote and inaccessible areas. In these difficult areas, the use of point of care devices is being used quite extensively. Collaboration between governmental agencies and NGOs is still inadequate. Most LMICs and low-income countries have programs for communicable diseases but very little is done for NCDs. Very few countries have adopted NCD frameworks (WHO PEN and HEARTS) in their programs. Integration of these programs in early detection, timely intervention and access to kidney replacement therapy is, in fact, in alignment with the planned commitments of universal health coverage.

Economic, gender, and racial inequities play a major role in restricted access to kidney replacement therapy, particularly in the area of kidney transplantation. There is inadequate transplant capacity in LMICs, and the high cost of kidney transplantation and medications during the first year (median $13,013) cause considerable financial burden for patients, many of whom face significant out-of-pocket expenses.S1 Deceased donor transplantation rates remain low, contributing to prolonged waiting times and elevated waitlist mortality; in 2024, in the World Health Organization Africa Region, the number of patients who died while on the kidney transplant waitlist markedly exceeded the number remaining on the waitlist at the end of the year.S2 Reliance on living donor transplant reinforces gender and sex disparities in LMIC and low-income countries. In the ASTREG-WIT-KT Registry analysis, the Indian data, contributed by a single high-volume public-sector transplant centre, showed one of the most pronounced sex imbalances, with female accounting for the highest proportion of living kidney donors in the region (71.0%–81.1%), whereas the proportion of female among living donor kidney transplant recipients was the lowest in the region (14.8%–19.1%).S3 This unfortunate situation begs for urgent attention from the government, and multiple barriers impacting kidney transplantation need to be addressed.

Advocacy for Kidney Health: The Way Forward

With the growing recognition of CKD as a significant NCD, the health care community should start talking with their governments about taking concrete steps advancing kidney care.S4 As governments are more likely to prioritize kidney health when reliable national data on disease burden, outcomes, and costs are available, it is important that all stakeholders generate evidence expeditiously (developing CKD and kidney replacement therapy registries and a culture of sex-disaggregated reporting of data). Data are slowly emerging from various global initiatives which should enable policy makers to plan resource allocation.S5 Efforts of multisectoral advocacy coalitions are equally important. Such coalitions play a pivotal role in sustaining dialogue with governments. Alliances involving various stakeholders and presence of organized advocacy groups correlates with governmental recognition of CKD as a health priority. Structured engagement tools can facilitate translation of scientific evidence into policy decisions. Mechanisms, such as the World Health Organization’s Evidence-Informed Policy Network, are important documents which can be stated in conversations with the governments. It supports partnerships that foster evidence-based health policymaking by linking researchers and policymakers and promoting evidence dialogues (Figure 1).S6

Figure 1.

CKD in LMICs: Burden, barriers, advocacy, and policy.

As per the Global Kidney Health Atlas, fewer than half of the countries have national NCD strategies, and only about one-third report CKD-specific policies, with wide variation across regions and income levels.S7 In such challenging circumstances, support of various NGOs, universities (various social service programs), and industry (corporate social responsibility) become important in advancing kidney care. One university in India (Amrita Vishwa Vidyapeetham, with which some of the authors are affiliated) has initiated various women-led initiatives over the past 2 decades, positioning women as agents of change.S8 Local grassroots health systems are developed by training frontline workers using digital and emerging technologies, particularly in remote and inaccessible areas, and have been implemented across India, Africa, and Central America, in partnership with governments, United Nation agencies, and other local stakeholders. Similarly, Kidney Health International, a nonprofit organization in Ghana, uses community engagement, health education, and free screening programmes to promote kidney-health awareness and early detection.S9 Regional collaboration can similarly strengthen health-system capacity. The CARE-NEPH East Africa initiative, developed by national kidney societies in Kenya, Uganda, Ethiopia, and Tanzania with the support of ISN, combines workforce development, subspecialty training, and institutional capacity building to strengthen kidney care across the region.S10 Such models illustrate the importance of multisectoral advocacy and community engagement.

The budgetary allocation for governments in developing countries for NCDs, and improvement of various social determinants of health (environmental pollution, sanitation, alleviation of poverty, gender inequities, housing etc.) is often inadequate. To reduce financial burden in already constrained economies, integrating CKD care in NCD programs will go a long way in alleviating the current situation. Instead of advocating for vertical CKD care, various agencies can integrate CKD care into universal health coverage as suggested by World Health Organization for other NCDs. Defined frameworks can be adapted for early detection, timely prevention and access to kidney replacement therapy. Health economic analyses and priority-setting frameworks show the cost-effectiveness of integrated care models and prevention strategies. The recent seventy-eighth World Health Assembly resolution and the fourth UN high level meeting political declaration have created a pivot for enhancing governmental support in improving kidney care. A framework for developing CKD care by governments and involved stakeholders is detailed in a recent article. (S11) Considering our unique situation, we propose an action plan for liaising with our governments to advocate for kidney health (Table 1).

Table 1.

Strategies for government liaison and advocating for kidney health

Strategy category	Key actions	Primary stakeholders	Mechanisms	Major challenges	Success metrics
Evidence generation & surveillance	Establish renal registries Conduct national CKD burden estimates Integrate CKD indicators into disease surveillance	Nephrology researchers, health ministries, statisticians, WHO/partners	Policy briefs, data-sharing meetings, surveillance reporting to health ministries	Limited data systems, underreporting, lack of trained analysts	National CKD prevalence/incidence data available Surveillance system reports
Policy integration & prioritization	Embed CKD within NCD national strategies Frame kidney health as health priority	Health ministries, Parliamentarians, policy advisors	Inclusion in national health plans Budget allocations	Competing health priorities Limited fiscal space	CKD included in NCD policy Public funding allocated
Multisectoral advocacy coalitions	Form alliances (patients, clinicians, NGOs, professional societies) for sustained advocacy	Patient organizations, kidney societies, NGO networks	Formal advocacy meetings, petitions, public campaigns	Resource constraints Fragmented voices	Coalition established Government response or commitments
Health economics & priority setting	Conduct cost-effectiveness analyses Prioritized intervention scoring	Economists, academics, health ministries	HTA shared with policymakers	Lack of economic expertise Data gaps	HTA published Policy adoption of cost-effective interventions
Awareness & public education	National awareness campaigns Community health education	Government communications, public health, media partners	Government-endorsed campaigns WKD events	Low health literacy Limited outreach infrastructure	Public awareness survey increases Screening upticks
Workforce & capacity building	Train primary care providers Develop dialysis expertise units	Medical colleges, health training institutes	Government-sponsored curriculum updates CME programs	Workforce shortages Brain- drain	Number of trained providers Improved CKD care quality
Service delivery expansion	Support dialysis centers Ensure affordable KRT access; integrate CKD screening	Health systems, hospitals Financing bodies	PPPs Government-sponsored programs	High costs Equipment maintenance	New centers Increased KRT coverage
Integration of CKD in UHC	Include CKD services in UHC benefit packages	Health ministries, payers, insurers	UHC policy revisions Reimbursement rules	Budget limits Competing claims	CKD care covered in UHC Reduced out-of-pocket costs
Digital health & telemedicine engagement	Deploy telehealth for CKD screening and follow-up	eHealth partners, mobile providers, government IT	Digital policy frameworks Funding for mHealth	Connectivity gaps Data privacy concerns	Telehealth adoption metrics Rural coverage
Monitoring, evaluation, & accountability	Define kidney health KPIs Annual policy impact reviews	Ministries of health, evaluators, academic partners	Performance dashboards Public policy scorecards	Weak M&E systems	Regular reports on CKD targets

CKD, chronic kidney disease; CME, continuing medical education; HTA, health technology assessment; IT, information technology; KPI, key performance indicator; KRT, kidney replacement therapy; mHealth, mobile health; NCD, noncommunicable disease; NGO, nongovernmental organization; PPP, public–private partnership; UHC, universal health coverage; WHO, World Health Organization; WKD, World Kidney Day.

The proposed framework brings together key elements required for advocating kidney health in LMIC and low-income country settings. The priority should be evidence generation to define the magnitude and the distribution of disease. Where reliable CKD data are lacking, a registry can initially be developed from regional dialysis or nephrology centers and progressively expanded to provide national pattern of disease burden and outcomes. This needs establishment of national renal disease registries, as well as incorporation of CKD indicators into already established NCD surveillance programs. Analysis and patterns in health economics can help understand which particular interventions, such as screening strategies or dialysis modalities, will provide the greatest benefit within the available resource set. Telenephrology and other such digital platforms can extend support to underserved areas and communities. Priorities will differ between and within countries; the approach should be to identify the most important local gap and plan interventions to overcome it first. Each of the strategy should be developed into a practical proposal outlining the implementing agency, resource allocation, workforce, and infrastructure requirements, and expected outcomes. Multisectoral engagement can bring together patients, clinicians, public-health experts, nongovernmental organizations, and government agencies.

Conclusion

Advocacy is the essential mechanism for translating the growing need for CKD care initiatives into meaningful policy action in LMICs because CKD remains underprioritized in national health agendas. Coordinated and collaborative multistakeholder advocacy efforts are needed to provide sustainable, economical, and equitable care. Liaising with governmental agencies and integrating CKD care health into universal health coverage will go a long way in making an impactful change in kidney health delivery in resource constrained nations.

Disclosures

All authors declare that they have no conflict of interest and no financial support was received in preparing the manuscript.

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