A Human Rights-Based Approach to Non-Communicable Diseases

Chapter 39

A Human Rights-Based Approach to Non-Communicable Diseases

Helena Nygren-Krug

Scope, Magnitude and Risk Factors

In recent years, the global public health community has increasingly been calling for intensified action to prevent and control non-communicable diseases (NCDs).¹ NCDs represent 60% of all deaths globally, with 80% of deaths due to non-communicable diseases occurring in low- and middle-income countries, and approximately 16 million deaths involving people less than 70 years of age.² Total deaths from NCDs are projected to increase by a further 17% over the next 10 years.³ NCDs, principally cardiovascular diseases, diabetes, cancers, and chronic respiratory diseases, caused an estimated 35 million deaths in 2005.⁴ These NCDs, often considered “life-style epidemics”, have a number of common modifiable risk factors—tobacco use, unhealthy diet and physical inactivity and the harmful use of alcohol. These risk factors are mainly behavioural and are on the rise everywhere due to the “nutrition transition” with diets rich in saturated fats and poorer in complex carbohydrates and dietary fibre, fruit and vegetables; the growth of urban lifestyles involving less physical exertion; and the promotion and rising consumption of tobacco and alcohol.⁵ While some of these risk factors, such as tobacco consumption, have received attention in recent years, others have been much neglected. Obesity, for example, is one of today’s most blatantly visible—yet most neglected—public health problems.⁶

A Human Rights Approach to Non-Communicable Diseases

The most recent World Health Assembly adopted a draft action plan to prevent and control non-communicable diseases (NCDs), recognizing that the global burden continues to grow.⁷ This plan sets out three strategic directives as follows:

1. Map the epidemics and analyze their social, economic, behavioural and political determinants as the basis for providing guidance on effective interventions;
   
2. Reduce the level of exposure of individuals and populations to the common modifiable risk factors and their determinants while strengthening the capacity of individuals and the population to make healthier choices and follow lifestyle patterns that foster good health;
   
3. And strengthen health care for people with NCDs.⁸

Human rights are relevant to each of these strategic directives. Overall, integrating a human rights-based approach to the efforts to address NCDs means that the realization of health-related human rights⁹ becomes the overall goal of these efforts and that human rights principles¹⁰ guide all actions towards this goal. Moreover, a human rights-based approach supports action to build the capacity of rights-holders to claim their rights, and duty-bearers to meet their obligations.¹¹ There are two main rationales for using a human rights approach to address NCDs. The intrinsic rationale, acknowledging that a human rights-based approach is the right thing to do, morally or legally; and the instrumental rationale, recognizing that a human rights-based approach leads to better and more sustainable human development outcomes.¹²

The human right to health is the right to the enjoyment of a variety of facilities, goods, services and conditions necessary for the realization of the highest attainable standard of health.¹³ It provides a universal normative framework to design and assess health-care and health determinants in relation to NCDs. Other human rights that guide and support action to address NCDs include equality and non-discrimination and the rights to information, education and participation.

Specific human rights instruments have been adopted over the years that have articulated rights in relation to specific groups of populations that have been exposed disproportionately to human rights violations, including the enjoyment of the right to health. Indigenous peoples; persons with disabilities; migrant workers; prisoners; ethnic, religious and linguistic minorities; women; children; are examples of population groups addressed in specific human rights instruments. Addressing the health of these population groups effectively requires an approach, which begins from their perspective, keeping in mind their needs and situations and with their full participation.

In addition to normative and analytical guidance, the human rights framework contains a number of international, regional and national mechanisms that can support monitoring and accountability in relation to action to address NCDs.

Analyzing and Addressing NCDs

A human rights-based approach provides not only a conceptual framework but also a practical methodology for analyzing and addressing the determinants of NCDs.¹⁴ It involves various steps of analysis, starting with a causal one, to identify the immediate, underlying and root causes of NCDs. This helps to go beyond the behavioural risk factors, such as smoking and overeating, to consider underlying and root causes, such as the enjoyment of a range of health-related human rights such as freedom from discrimination and the rights to safe and healthy working conditions, nutritious food, information and education. Secondly, a pattern (also called role/obligation) analysis aims at identifying who are the rights-holders and duty-bearers and their corresponding entitlements and obligations. This step in the analysis maps the various stakeholders involved in promoting or undermining actions to address NCDs. Under international human rights law, the government is the prime duty-bearer; it is under an obligation to promote and protect human rights across all sectors. Within government, in the context of NCDs, specific duty-bearers identified will range across sectors such as agriculture, finance and taxation, education, recreation and sports, media and communication, transportation, and urban planning. However, beyond the government, a range of other duty-bearers can be identified that have specific responsibilities. These may range from family members to multinational corporations and donors. In the area of NCDs, moreover, the private sector plays a significant role, including the tobacco, food, sugar, and alcohol industries. This does not, however, absolve the obligations of the government, which must protect human rights by regulating the private sector so that it acts in conformity with human rights.¹⁵ Some identified stakeholders may be both duty-bearer and rights-holder. For example, a teacher is a duty bearer vis-àvis children who should be educated on healthy eating habits, but is also a rights-holder in relation to local and national authorities that should give him or her the authority and resources to carry out health-promotion activities in schools.¹⁶

In a human rights-based approach to programming, human rights principles guide all stages of the analysis, including the principles of equality and the right to participation. The latter means that those groups identified as most affected should be involved in decisions about possible interventions. The human rights-based approach is concerned with the population groups most exposed to human rights violations: This stems from the focus on equality and non-discrimination in human rights discourse.¹⁷ Focusing the analysis on individuals and groups experiencing a disproportionate burden of exclusion, marginalization and discrimination will help unveil further underlying and root causes of NCDs. As such, the identity of the rights-holder(s) becomes an important and central feature in analyzing why the right to health is not being enjoyed. Addressing NCDs from a human rights perspective thus requires collecting disaggregated data on the prevalence of NCDs, to identify which population groups are most affected. Where there is no systematic collection of disaggregated data, efforts should nevertheless be made to identify the most vulnerable and/or marginalized population groups through research and interviews with those knowledgeable about the national and local context. Such an analysis usually reveals that some populations groups suffer consistently poorer health than others in the same country. For example, across countries, available mortality and morbidity data provide scientific evidence of significant inequalities in the health status of indigenous populations.¹⁸

Smoking, alcoholic and substance abuse are serious health and social problems, along with cardiovascular diseases, diabetes and cancer.¹⁹ Many of these illnesses are associated with lifestyle changes resulting from land displacement and acculturation, which constitute underlying and root causes of NCDs in indigenous communities. In this context, the UN Committee on Economic, Social and Cultural Rights has recognized that development-related activities that lead to the displacement of indigenous peoples against their will from their traditional territories and environment, denying them their sources of nutrition and breaking their symbiotic relationship with their lands, has a deleterious effect on their health.²⁰ To improve indigenous health, therefore, a holistic approach is required, considering the range of underlying, structural and root causes, and with full participation of the indigenous communities affected.

The third, and final, step in a human rights analysis is the capacity gap analysis, to reveal why rights are not realized, paying particular attention to why duty-bearers are not living up to their human rights obligations or responsibilities. This involves considering questions such as the authority, motivation, commitment, ability to communicate and leadership of duty-bearers, as well as their access to, and control over, resources. This analysis will reveal where interventions will be most effective and how they can be designed so as to enhance the capacities of rights-holders to claim their rights and duty-bearers to meet their obligations. The involvement of rights-holders in all stages of a rights-based analysis is not only a question of safeguarding the right to participation, but also has instrumental value, ensuring that interventions are culturally appropriate and sustainable. Anchored in human rights law, interventions should span across government actors and other stakeholders and generate change at different levels synergistically, from the local and community level to the national and international levels. At all these levels, a priority focus for a human rights-based response is how to enhance accountability of the duty-bearers so that they live up to, and deliver on, their obligations and responsibilities.

A human rights analysis of NCDs reveals those required to take action and what human rights obligations and responsibilities they have assumed. Accountability is one of the most important features of human rights and requires effective monitoring. To facilitate the monitoring of State Parties’ performance in realizing the various rights enshrined in the core UN human rights treaties, the human rights treaty bodies have been engaged in identifying appropriate indicators. Indicators proposed for the monitoring of the right to health include some particularly relevant to monitoring the commitment of governments to address NCDs. Such indicators include: Death rates associated with and prevalence of NCDs (an “outcome indicator”); the proportion of school-going children educated on health and nutrition issues (a “process indicator”) and, finally, the timeframe and coverage of national policy on child health and nutrition (a “structural indicator”).²¹

Human rights law focuses on state obligations and thus mechanisms at international, regional and national levels focus on monitoring government performance. Since the 1990s, however, there has been an ongoing debate regarding the roles and responsibilities of the private sector in promoting and violating human rights. This debate has focused predominantly on labour standards, with a plethora of initiatives unfolding, mainly in the form of self-regulation and voluntary codes of conduct. In recent years, moreover, attempts are being made at clarifying duties and roles of the private sector specifically in relation to the right to health.²² Meanwhile, work in public health is increasingly engaging the private sector to attract resources, attention and increase outreach and impact of public health interventions. This poses inherent risks, particularly when there are tremendous commercial interests involved and there is no common framework to address human rights and businesses. The Special Representative of the Secretary-General on the issue of human rights and transnational corporations and other business enterprises, John Ruggie, has sought to address the lack of a framework by proposing three foundational principles: Protect, respect and access to remedy.²³ The first element aims to underscore the role of the state as the steward and prime-duty bearer. Governments need to mainstream the business and human rights agenda across all sectors and ensure adequate domestic policy coherence in order to ensure policy coherence at the international level.²⁴ The second principle—the principle to respect—is directed at companies themselves, recognizing a corporate responsibility to “do no harm”. This poses particular challenges in the context of NCDs and tobacco in particular. How can the tobacco industry operate in a way consistent with human rights? Can a tobacco company respect the right to life—the most fundamental of all human rights—or is there a contradiction given that the substance that it produces, tobacco, kills a third to a half of all those who use it?²⁵ Application of this principle in practice challenges the very raison-d’être of some businesses. The third and final principle in the framework proposed is that of effective remedy.

It is the first principle—to protect—that has evolved most substantively in international law given that states are the principal actors in this field. As far back as in the 70s, high profile nongovernmental organizations’ (NGO) campaigns sought to protect and promote breast-feeding for babies and prevent the inappropriate marketing of breast milk substitutes.²⁶ Supported by UNICEF and the WHO, these campaigns led governments in the World Health Assembly to adopt the International Code of Marketing of Breast-Milk Substitutes (1981) which constitutes a set of recommendations to regulate the marketing of breast-milk substitutes, feeding bottles and teats.²⁷ Breastfeeding has long-term benefits associated with NCDs. Adults who were breastfed as babies often have lower blood pressure and lower cholesterol, as well as lower rates of overweight, obesity and type-2 diabetes.²⁸ Although most of the countries that have adopted the Code have put in place some implementing measures, frequently by enforceable legislation, voluntary means are also being used. Despite this now long-standing code, however, manufacturers of infant formula milks are still accused of using manipulative marketing techniques that have an adverse affect on breastfeeding rates around the work.²⁹ According to Save the Children, an international treaty on Baby Milk marketing is required, based on the WHO code but with much stronger state obligations and institutional oversight.³⁰ Others argue that the Code has become a flexible, clear and authoritative reference and contains more detailed standards than could have been expected in a binding convention.

Accountability is closely linked to the need for legal standards that bind duty bearers to take action. General Comment No. 14 notes that “(t)he realization of the right to health may be pursued through numerous, complementary approaches, such as the formulation of health policies, or the implementation of health programs developed by the World Health Organization (WHO), or the adoption of specific legal instruments …”³¹