What Role Can the Right to Health Play in Advancing Equity in Kidney Care?
2021; Elsevier BV; Volume: 41; Issue: 3 Linguagem: Inglês
10.1016/j.semnephrol.2021.05.003
ISSN1558-4488
Autores Tópico(s)Healthcare cost, quality, practices
ResumoSummary: Kidney disease, whether acute or chronic, is an important health concern for more than 750 million people worldwide. Although its magnitude has been better studied within developed countries, evidence increasingly suggests similar scales of impact in developing and underdeveloped countries. On a shared planet where limited resources and high costs keep life-saving care out of reach for the poor and other structurally disadvantaged populations, addressing health concerns on such a large scale requires a governing basis in the recognition of the universal right to health. As designed under international human rights law, the right to health is meant to be legally enforceable on par with other human rights, and so provides a firm guiding framework for advancing health equity. This article traces the evolution of the right to health in international human rights law while assessing the framework's potential contributions to equitable access to treatment in forums including domestic litigation and rights-based advocacy tools. This article ultimately outlines and clarifies the right to health as a viable, justiciable means for advancing equitable access to kidney treatment and care. Summary: Kidney disease, whether acute or chronic, is an important health concern for more than 750 million people worldwide. Although its magnitude has been better studied within developed countries, evidence increasingly suggests similar scales of impact in developing and underdeveloped countries. On a shared planet where limited resources and high costs keep life-saving care out of reach for the poor and other structurally disadvantaged populations, addressing health concerns on such a large scale requires a governing basis in the recognition of the universal right to health. As designed under international human rights law, the right to health is meant to be legally enforceable on par with other human rights, and so provides a firm guiding framework for advancing health equity. This article traces the evolution of the right to health in international human rights law while assessing the framework's potential contributions to equitable access to treatment in forums including domestic litigation and rights-based advocacy tools. This article ultimately outlines and clarifies the right to health as a viable, justiciable means for advancing equitable access to kidney treatment and care. In 1997, in the first case on the country's constitutional right to access health care services decided by the recently established South African Constitutional Court, the court denied a desperately ill man's (Mr. Soobramoney) claim to dialysis, citing limited resources and extensive poverty in the country.1Thiagraj Soobramoney v. Minister of Health (Kwa-Zulu Natal). SA 1, 765 (Constitutional Court 1998).Google Scholar In his supporting decision, Justice Albie Sachs articulated the crux of this decision as follows: "If resources were co-extensive with compassion, I have no doubt as to what my decision would have been. Unfortunately, the resources are limited, and I can find no reason to interfere with the allocation undertaken by those better equipped than I to deal with the agonising choices that had to be made."1Thiagraj Soobramoney v. Minister of Health (Kwa-Zulu Natal). SA 1, 765 (Constitutional Court 1998).Google Scholar This decision would not seem to suggest an important role for human rights such as health in ensuring a more just and equitable approach to kidney care. However, as this article will illustrate, the South African Constitutional Court's decision regarding Mr. Soobramoney belies the extent to which human rights offer an important framework that nonetheless can guide state action and policy relating to kidney disease in multiple ways that conduce greater equity, insofar as it guides how states ration access to expensive kidney care. Under international human rights law, states have an obligation to ensure access to affordable care for all. Health care for kidney diseases covers a broad spectrum of duties, including ensuring that goods, facilities, and services are accessible to everyone without discrimination, respectful of medical ethics, scientifically and medically appropriate, and are of good quality.2United Nations Economic and Social CouncilGeneral comment no. 14: the right to the highest attainable standard of health. UN Committee on Economic, Social and Cultural Rights (CESCR), Geneva2000Google Scholar Access to medicines, in particular, as a fundamental element of the right to health, has been affirmed by numerous national courts, the World Health Organization (WHO), the United Nations (UN) Human Rights Council, and other international actors. Although the broad interpretation of entitlements and duties afforded under the universal right to health has been subject to considerable debate among policy makers and scholars, it nonetheless offers a binding framework that can be used to guide state responses to ensure greater access to care. This article traces the evolution of the right to health in international human rights law to assess the framework's potential contributions to equitable access to treatment and care. Situating this right at the nexus of global health policy in the UN human rights system, this article first locates kidney disease within a human rights framework. Then the development of the international human rights legal framework relevant to health is outlined. Finally, traditional human rights measures, such as litigation and rights-based advocacy, are discussed, and, ultimately, the extent to which the right to health is a viable, justiciable means for advancing equitable access to kidney treatment and care is explored. With the global increase in life expectancy, many countries are finding themselves increasingly unable to meet the health needs of their citizens. There are numerous reasons for this, but one outsized factor is that the growth and management of national health systems simply have not kept pace with the steady increase of noncommunicable diseases. As a result, diseases associated with advanced age now make up most of the top causes of death in the world, with kidney disease being high on the list: more than 750 million people are affected worldwide.3GBD 2015 DALYs and HALE CollaboratorsGlobal, regional, and national disability-adjusted life-years (DALYs) for 315 diseases and injuries and healthy life expectancy (HALE), 1990-2015: a systematic analysis for the Global Burden of Disease Study 2015.Lancet. 2016; 388: 1603-1658Abstract Full Text Full Text PDF PubMed Scopus (1177) Google Scholar Although changes in epidemiology, economics, and ethical frameworks have allowed for the rapid development and distribution of treatments over the years, significant concerns regarding access to care still remain. In both high- and low-income countries, treatment remains unaffordable, and most people who develop kidney failure are unable to get the care they need. The Global Burden of Disease Study suggests that nearly 1.2 million people died from chronic kidney disease in 2015,4GBD 2015 Mortality and Causes of Death CollaboratorsGlobal, regional, and national life expectancy, all-cause mortality, and cause-specific mortality for 249 causes of death, 1980-2015: a systematic analysis for the Global Burden of Disease Study 2015.Lancet. 2016; 388: 1459-1544Abstract Full Text Full Text PDF PubMed Scopus (3244) Google Scholar while other studies have estimated that more than 2 million people died in 2010 because they had no access to life-saving dialysis.5Liyanage T Ninomiya T Jha V et al.Worldwide access to treatment for end-stage kidney disease: a systematic review.Lancet. 2015; 385: 1975-1982Abstract Full Text Full Text PDF PubMed Scopus (794) Google Scholar Kidney disease has long been listed among the most neglected chronic diseases worldwide.6Luyckx VA Tonelli M Stanifer JW The global burden of kidney disease and the sustainable development goals.Bull World Health Organ. 2018; 96 (414-22D)Crossref PubMed Scopus (221) Google Scholar Its disproportionate impact across lines of sex, ethnicity, location, and socioeconomic status has grown steadily apparent in both high-, medium-, and low-income countries.7Volkova N McClellan W Klein M et al.Neighborhood poverty and racial differences in ESRD incidence.J Am Soc Nephrol. 2008; 19: 356-364Crossref PubMed Scopus (145) Google Scholar,8Sabanayagam C Lim SC Wong TY Lee J Shankar A Tai ES Ethnic disparities in prevalence and impact of risk factors of chronic kidney disease.Nephrol Dial Transplant. 2010; 25: 2564-2570Crossref PubMed Scopus (56) Google Scholar In many settings, provision of care is stratified by social, economic, and political factors, exacerbating disparities not only in the burden of illness, but also in people's ability to access the care and treatment they need. Such matters are compounded during disruptive events such as the current coronavirus disease 2019 crisis, where states are grappling with interrupted international supply chains and neglected national distribution networks. As climate change and increasing economic activity make such global health crises increasingly likely, there is an urgent need to strengthen state responsibility for citizens' health by ensuring greater availability and access to treatment. Despite state initiatives to improve equity in the prevention, diagnosis, and treatment of all forms of kidney disease, efforts to improve access often have been hindered by gaps in local health systems and a basic lack of infrastructure. In low- and middle-income countries (LMICs), efforts to improve universal access have been curtailed severely by cost of treatment. The WHO estimates that nearly 90% of the population in LMICs have to pay for health services and care through out-of- pocket payments.9World Health Organization (WHO)Access to medicines: making market forces serve the poor. World Health Organization, Geneva2017Google Scholar Studies suggest that in these countries, where health primarily is funded privately and patients are required to pay directly for services on their own, a month's supply of essential medications for the treatment of chronic disease can cost up to 18 days' wages.10Kishore SP Vedanthan R Fuster V Promoting global cardiovascular health ensuring access to essential cardiovascular medicines in low- and middle-income countries.J Am Coll Cardiol. 2011; 57: 1980-1987Crossref PubMed Scopus (36) Google Scholar The out-of-pocket costs of dialysis for acute kidney injury or end-stage kidney disease are even higher.11Olowu WA Niang A Osafo C et al.Outcomes of acute kidney injury in children and adults in sub-Saharan Africa: a systematic review.Lancet Glob Health. 2016; 4: e242-e250Abstract Full Text Full Text PDF PubMed Scopus (70) Google Scholar,12Jha V Current status of end-stage renal disease care in India and Pakistan.Kidney Int Suppl. 2013; 3: 157-160Abstract Full Text Full Text PDF Scopus (82) Google Scholar When governments in LMICs partially fund treatment, patients who otherwise are eligible for dialysis often may be denied access because of their socioeconomic status.13Moosa MR Maree JD Chirehwa MT Benatar SR Use of the 'Accountability for Reasonableness' approach to improve fairness in accessing dialysis in a middle-income country.PLoS One. 2016; 11e0164201Crossref PubMed Scopus (25) Google Scholar Geographic factors further exacerbate the economic constraints: treatment almost always is most readily available in cities, severely curtailing the ability of low-income populations and those living in rural areas to receive basic treatment. Although the driving factor for kidney disease in high-income countries usually is reduced access to care, LMICs face a far more challenging problem: wider swaths of poverty that suffer from structural and environmental issues, thereby increasing the prevalence of kidney disease in the first place. South Africa offers a case in point. The country's health system is distinctly two-tiered: the private sector serves 28% to 38% of the population while the state sector serves the remaining 62% to 72%.14Etheredge H Fabian J Challenges in expanding access to dialysis in South Africa-expensive modalities, cost constraints and human rights.Healthcare (Basel). 2017; 5: 38Crossref Scopus (17) Google Scholar The latter's higher patient load, however, does not match the former's doctor-to-patient ratio: the public health system is heavily under-resourced, with limited facilities and constant equipment shortages. The country has long used rationing policies to balance limited resources with its obligation to protect population health, whereby only those who are eligible to receive kidney transplants are accepted into state-run dialysis programs.15South African Department of HealthGuidelines for chronic renal dialysis. South Africa: Government of the Republic of South Africa, 2009http://www.kznhealth.gov.za/medicine/dialysisguide.pdfGoogle Scholar In practice, this approach has been implemented poorly, with reports showing that more than 60% of people who present themselves for care are turned away because they lack the funds and means to travel to treatment centers.16Moosa MR Kidd M The dangers of rationing dialysis treatment: the dilemma facing a developing country.Kidney Int. 2006; 70: 1107-1114Abstract Full Text Full Text PDF PubMed Scopus (99) Google Scholar The magnitude of concerns caused by a lack of access to care in Nigeria are even more severe. Even though the country adopted a fully functioning national health insurance scheme in 2005, populations that potentially should benefit from such coverage, such as informal workers and those living in rural areas, still are not covered. Not only does the state health budget fall below 3% of the total government budget (well below the world average of 5%), but the median cost of inpatient chronic kidney treatment amounts to more than $431 per person. As a result, out-of-pocket costs continue to push thousands of patients into poverty each year.17Orubuloye IO Oni JB Health transition research in Nigeria in the era of the structural adjustment programme.Health Transition Rev. 1996; : 301-324PubMed Google Scholar,18Adejumo OA Akinbodewa AA Ogunleye A Enikuomehin AC Lawal OM Cost implication of inpatient care of chronic kidney disease patients in a tertiary hospital in Southwest Nigeria.Saudi J Kidney Dis Transpl. 2020; 31: 209-214Crossref PubMed Scopus (3) Google Scholar The promotion of more equitable health coverage requires that states reduce the financial hardships faced by people seeking kidney treatment. All people, regardless of sex, race, economic status, and so forth, must have the ability to access affordable and quality care. Although access to treatment is a fundamental aspect of the right to health, its ultimate realization calls for a holistic approach that also addresses the underlying determinants that impact population health. To this end, it becomes all the more important that state responses to improve access to kidney treatment and care are grounded in the various standards and duties of right to health. The evolution of the right to health has its basis in the aftermath of World War II and the development of the UN (Fig. 1). The founding countries met between 1945 and 1946 to determine the scope and content of the UN Charter, but there was no fundamental commitment to an international bill of human rights. It was only in the face of pressures from nongovernmental organizations and some participating states that any mention of rights is included in the Charter.19Glendon M A world made new: Eleanor Roosevelt and the universal declaration of human rights. Random House, New York2002Google Scholar To this end, the Charter included as one of its purposes the achievement of "international cooperation […] in promoting and encouraging respect for human rights and for fundamental freedoms for all without distinction as to race, sex, language, or religion."20United Nations (UN)Charter of the United Nations. United Nations, San Francisco, CA1945Google Scholar Although the Charter does not specifically address health as a human right, it still includes as an objective the need to promote "solutions of international economic, social, health, and related problems."20United Nations (UN)Charter of the United Nations. United Nations, San Francisco, CA1945Google Scholar To promote this objective, the WHO was established in 1946 as a specialized UN agency with the goal of ensuring the realization of health as a "state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity."21International Health ConferenceConstitution of the World health Organization. 1946.in: 80. 2002: 983-984Google Scholar The Constitution of the WHO provides the first expression of health as a human right, recognizing that "the enjoyment of the highest attainable standard of health is a fundamental right of every human being without distinction of race, religion, political belief, economic or social condition."21International Health ConferenceConstitution of the World health Organization. 1946.in: 80. 2002: 983-984Google Scholar Two years later, the Universal Declaration of Human Rights was adopted as the first international law expression of human rights, recognizing the equal importance of health and other social and economic rights alongside civil and political rights.22UN General AssemblyUniversal declaration of human rights. UN General Assembly, Paris1948Google Scholar Despite its progressive intentions, the UN's ambition of creating a single treaty recognizing the importance of health alongside civil and political rights was thwarted. At the time of drafting, the Cold War was drawing lines across the world; ideological differences on the meaning of rights confused any universal agreement on a single binding legal treaty. Instead, these rights were elaborated in two separate human rights treaties—one focused on civil and political rights (the International Covenant on Civil and Political Rights),23UN General AssemblyInternational covenant on civil and political rights. UN General Assembly, New York1976Google Scholar and the other on social and economic rights (the International Covenant on Economic, Social, and Cultural Rights, ICESCR)—each with different approaches to implementation.24UN General AssemblyInternational covenant on economic, social and cultural rights. UN General Assembly, Geneva1976Google Scholar Under the International Covenant on Civil and Political Rights, civil and political rights were made subject to immediate realization. However, under the ICESCR, the fulfillment of rights such as health lacked a similar immediacy, and instead was consigned to an indeterminate, progressive realization within the maximum available resources. Today, the ICESCR provides the most authoritative pronouncement of the right to health, recognizing in Article 12(1) the right of everyone to the highest attainable standard of physical and mental health. Article 12(2) further provides the steps states must take to recognize this standard, including reducing stillbirth and infant mortality rates; improving all aspects of environmental and industrial hygiene; preventing, treating, and controlling epidemic, endemic, occupational, and other diseases; and creating conditions that ensure medical services and attention to all in the event of sickness. Because of the requirement of progressive realization, however, states only are required to realize the right to health "within maximum available resources."24UN General AssemblyInternational covenant on economic, social and cultural rights. UN General Assembly, Geneva1976Google Scholar This limitation creates a loophole in which states could claim resource constraints as an excuse for inaction and justify almost any shortfalls in providing health care. This is compounded by the fact that the ICESCR is relatively silent as to the precise duties ratifying states must fulfill to ensure the realization of the right to health. Although some clarity has emerged through the development of subsequent human rights treaties that ensure the protection of health for certain vulnerable populations (including racial minorities,25UN General AssemblyInternational convention on the elimination of all forms of racial discrimination. UN General Assembly, New York1969Google Scholar women,26UN General AssemblyConvention on the elimination of all forms of discrimination against women. UN General Assembly, New York1981Google Scholar children,27UN General AssemblyConvention on the rights of the child. UN General Assembly, New York1990Google Scholar and people with disabilities28UN General AssemblyConvention on the rights of persons with disabilities. UN General Assembly, New York2008Google Scholar), these treaties still are limited by their demographic specificities. Because of this, the duty of elaborating the content and meaning of the right to health has long since fallen to the Committee on Economic, Social and Cultural Rights (CESCR), particularly through its practice of issuing general comments interpreting various provisions in the ICESCR. To date, the most comprehensive interpretation of the right to health is provided in the CESCR's General Comment 14.2United Nations Economic and Social CouncilGeneral comment no. 14: the right to the highest attainable standard of health. UN Committee on Economic, Social and Cultural Rights (CESCR), Geneva2000Google Scholar Although the meaning of the right to health has been questioned and critiqued by scholars and policymakers for years, General Comment 14 marks a notable fulcrum owing to several conceptual advances. It illuminates the essential elements of the right, its entitlements, and states' core obligations, as well as their general duties to respect, protect, and fulfill the right to health. The General Comment "provides vital guidance to policy makers, judges and civil society in realizing, enforcing and claiming this right. It goes a significant way towards resolving the long-standing vagueness of the right to health that has plagued its enforcement in legal and policy arenas."29Forman L Decoding the right to health: what could it offer to global health?.Bioethica Forum. 2015; 8: 95Google Scholar Today, it increasingly is recognized that to reduce disparities in access to health programs and services, states must address the social determinants that curtail access in the first place. Noting the way health and other rights, such as the need for housing, food, and so forth, are inter-related, the Committee is explicit in elaborating the "complete physical, mental, social wellbeing" put forth by the WHO.30Constitution of the World Health Organization. Am J Public Health Nations Health. 1946;36:1315-1323.Google Scholar They outline health as not simply the right to be healthy, but includes access to timely and appropriate health care as well as health's underlying determinants: access to food, water, sanitation, safe working conditions, and a healthy environment.2United Nations Economic and Social CouncilGeneral comment no. 14: the right to the highest attainable standard of health. UN Committee on Economic, Social and Cultural Rights (CESCR), Geneva2000Google Scholar Although the realization of the highest attainable standard of health is dependent on resources and thus will vary from country to country, the Committee makes clear that the right to health includes certain essential elements irrespective of a country's development level. States, for example, must ensure that health care facilities, goods, and services are available, accessible, acceptable, and of good quality for all (core principles and components of the right to health are highlighted in Tables 1 and 2). As applied to kidney treatment and care, these duties require states to ensure the availability, accessibility, acceptability, and good quality of care to its people. Despite its robust approach to national implementation policy, however, General Comment 14 offers no guidance on the specific funding or financing models states should adopt under the right to health to ensure affordable and accessible health care. In this regard, the WHO is far more comprehensive in its guidance on ways states can maintain adequate levels of funding through a variety of financial instruments and equitable payment mechanisms.31World Health Organization (WHO)Equitable access to essential medicines: a framework for collective action. WHO, Geneva2004https://apps.who.int/iris/handle/10665/68571Google Scholar,32World Health Organization (WHO)The path to universal coverage: World Health Report 10. World Health Organization, Geneva2010https://www.who.int/whr/2010/en/Google ScholarTable 1Core Principles of Human RightsAccountabilityAnswerability of state and nonstate duty-bearers for observance of human rightsEquality and nondiscriminationAccess to all with no discrimination on any groundsAddress social determinants of health to improve equalityNondiscrimination must be stipulated in official policies, guidance, and practicesParticipationInclusion of all stakeholders throughout programming cycles Empowerment of citizensAs outlined in WHO Human Rights and Health Fact Sheet. Available from: https://www.who.int/news-room/fact-sheets/detail/human-rights-and-health. Accessed June 17, 2021. Open table in a new tab Table 2Core Components of the Right to Health CareAvailabilityFunctioning public health facilities for allAccessibilityPhysically, economically, geographicallyAcceptabilityEthical, culturally appropriate, gender-sensitiveQualitySafe, effective, efficient, timely, equitable, integratedCore elementsProgressive realizationNonretrogressionAs outlined in WHO Human Rights and Health Fact Sheet. Available from: https://www.who.int/news-room/fact-sheets/detail/human-rights-and-health. Accessed June 17, 2021. Open table in a new tab As outlined in WHO Human Rights and Health Fact Sheet. Available from: https://www.who.int/news-room/fact-sheets/detail/human-rights-and-health. Accessed June 17, 2021. As outlined in WHO Human Rights and Health Fact Sheet. Available from: https://www.who.int/news-room/fact-sheets/detail/human-rights-and-health. Accessed June 17, 2021. Although international awareness and the continued re-evaluations of such strategies go a long way toward meeting the needs of citizens, states differ in what they qualify as basic needs or in how they allocate scarce resources accordingly. Thus, General Comment 14 identifies minimum core obligations that must be met irrespective of resource constraints. Specifically, states must ensure nondiscriminatory access to health facilities, goods, services, access to basic shelter, housing, and sanitation; access to essential medicines; the equitable distribution of health services; and the establishment of a strong national health policy.2United Nations Economic and Social CouncilGeneral comment no. 14: the right to the highest attainable standard of health. UN Committee on Economic, Social and Cultural Rights (CESCR), Geneva2000Google Scholar This means that states must, at a minimum, take steps to continuously improve access and adopt and implement a strategy for addressing not only major disease burdens but also individual health concerns. If even a small percentage of its population has a life-threatening condition, the state still has the obligation to develop a public health strategy and plan of action to address treatment needs, it cannot claim resource constraints as a reason not to do so. `The Committee interprets the paths to progressive realization as consisting of two key elements: immediate action in ensuring nondiscrimination, and concrete and deliberate steps toward full realization of the right to health.2United Nations Economic and Social CouncilGeneral comment no. 14: the right to the highest attainable standard of health. UN Committee on Economic, Social and Cultural Rights (CESCR), Geneva2000Google Scholar Although states can justify some inaction in health policy and reform, they cannot justify a failure to redress the consequences of their inaction. As such, General Comment 14 aims to clarify a state's duties toward progressive realization to counter the belief that progressive realization allows states to indefinitely delay taking action.33Forman L Bomze S International human rights law and the right to health: an overview of legal standards and accountability mechanisms.in: Backman G Fitchett J The right to health: theory and practice. Studentlitteratur AB, Lund2012: 33-72Google Scholar The Committee, for example, identifies international assistance and cooperation as a key component of progressive realization,2United Nations Economic and Social CouncilGeneral comment no. 14: the right to the highest attainable standard of health. UN Committee on Economic, Social and Cultural Rights (CESCR), Geneva2000Google Scholar ensuring that if a lack of resources may make it difficult for states to implement basic health programs and interventions, governments can seek technical and economic assistance from the world community. To this end, the committee explicitly emphasizes that right-to-health obligations are not limited to domestic borders, but encompass those that fall outside state lines as well.2United Nations Economic and Social CouncilGeneral comment no. 14: the right to the highest attainable standard of health. UN Committee on Economic, Social and Cultural Rights (CESCR), Geneva2000Google Scholar Thus, if an industrialized nation were to disregard its duty
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