Stigma and Society

#### **Chapter 10**

## Implications of Social Stigma on the Health Outcomes of Marginalised Groups

*Jacqueline Carol Matthews-Mthembu and Gadija Khan*

#### **Abstract**

*Research Focus:* Stigma is a longstanding issue for South Africa as it is influenced by a history of typification. Social marginalisation is influenced by a myriad of socially structured norms and those who experience stigma, are often faced with social devaluation within their society. In addition, experiences of discrimination may lead to internalised stigma that may lower the self-esteem and agency as well as negatively affect the well-being of many. *Methods:* This chapter uses current literature to propose that stigma, remain a public health concern. *Recommendations:* The findings suggest recommendations that are likely to enhance programme and policy interventions aimed to decrease stigma. Overview Stigma has been a longstanding issue for South Africa as it is influenced by a history of typification. Social marginalisation is influenced by a myriad of socially structured norms and those who experience stigma, are often faced with social devaluation within their society. This policy brief proposes that stigma, and in particular its association with certain marginalised groups, remain a public health concern. It further discusses possible recommendations that are likely to enhance both programme and policy interventions aimed to decrease stigma or at the least, make individuals aware of their complicity in reproducing and maintaining social stigmatisation.

**Keywords:** social stigma, marginalisation, internalised stigma, mental health, sexual orientation and gender identity, HIV

#### **1. Introduction**

The sociologist Erving Goffman [1], provided a widely used definition of stigma which asserts that stigma is a means through which an individual's image is tainted because of a certain characteristic or identity. More recent, definitions suggests that stigma is a concept that is socially constructed and situational; it is shaped by the culture and history of a society and may not transcend time and space [1, 2]. "Rather, the stigmas that prevail about a certain group are located in essentialist stereotypes that have been patterned over time" [3]. Stigmatisation therefore gives root to generalised stereotypes (or ideas) about a person or group which in turn may lead to blatant discriminatory and prejudiced attitudes toward that person or group [4]. There are

different types of stigma such as public (externalised or experienced stigma) as well as self-stigma i.e. internalised stigma [5].

South Africa's Apartheid history is entrenched in essentialized ideas about its people, with racism at its core. So much so, that it seems like typifying each other in terms of race, gender and sexuality is a normative measure of the 'worth' of an individual. These ideas are socially constructed and ingrained in the fabric of society and has become the yardstick in health-related situations, including attitudes toward people living with HIV and those with mental disorders. As such, social stigma is shown to have a devastating effect on society [4]. Nevertheless, our country, with its progressive Constitution, has made immeasurable strides in the attempt to curb stigma, but much is still to be done to improve the level of tolerance toward those we "other".

Stigma is a major social determinant of health, it is a cross-sectoral phenomenon, which penetrates at various levels of the health care system including interpersonal, organisational and structural levels [6, 7]. Literature documents a variety of social, physical and physiological consequences of stigma such as isolation and rejection, blatant discrimination and ridicule and violence [3, 5, 8, 9]. Stigma has also been found to have direct and indirect effects on health seeking behaviours and health outcomes. As such, there has been calls for increased attention and urgency toward reducing stigma against marginalised groups, considering its implications on health and wellbeing [6, 10, 11]. This brief broadly focus on the public health implications of stigma for three marginalised groups namely: people with mental disorders, people whose sexual orientation and gender identity (SOGI) is different from their assigned sex at birth and people living with HIV (PLHIV).

#### **2. Mental health disorders**

There is sufficient evidence to demonstrate the health system defects in terms of mental health users, stigma and negative traumatic experiences (ill-treatment) at health facilities or by health care providers [12]. The health policy framework integrates chronic conditions including mental health care into primary health care (PHC), which in itself, serves as a way to destigmatize people with mental disorders. However, although the PHC 101 guideline, train health care providers on the diagnoses and treatment of people with mental conditions, it fails to address stigma and discrimination attached to these conditions. This shows implications for access and utilisation of mental health services (e.g. delayed health seeking and non-adherence) as well as the quality of life and well-being of those diagnosed with mental disorders [5, 6].

In regard to interventions to reduce mental disorder-related stigma within society, evidence suggest that family focused interventions, specifically, that of psycho-education on the causes, symptoms and how to care for someone with a mental disorder, is imperative. This is particularly important given the shift toward deinstitutionalisation, which renders the involvement of family members and reintegration into society crucial steps toward improving the health outcomes of people with mental disorders [5].

#### **3. Sexual orientation and gender identities (SOGI)**

Sexual orientation and gender identities or SOGI-related stigma is highly prevalent in South Africa and is often grounds upon which LGBTIQ+ people experience various degrees of abuse at the hand of those who hold heteronormative ideals. In the same

*Implications of Social Stigma on the Health Outcomes of Marginalised Groups DOI: http://dx.doi.org/10.5772/intechopen.104423*

vein, although progressive legislation legally protect the rights of LGBTIQ+ people to health services, it has also been restricted by heteronormative gatekeepers at local health facility level [11]. Furthermore, there is evidence to suggest that the public health care system is non-responsive to the diverse health needs of LGBTIQ+ people [9, 11]. The LGBTIQ+ population is often grouped together, yet they are very diverse groups. For example, the National Strategic Plan for HIV, TB and STIs (2007–2011) acknowledges that stigma reduction for the LGBTIQ+ population make them less vulnerable to HIV while the 2017–2022 plan encourages the scaling up of programmes geared toward zero stigma. However, greater programmatic and legislative commitment is focused on those who identify as gay and men who have sex with men (MSM) [9, 11, 13]. Reportedly, the development of policy that reflect the diversity within LGBTIQ+ and the necessary guidelines needed to offer specialised health care to sub-populations, is still underway. In the interim, there are important lessons to be learned from private healthcare and NGOs/civils society organisations where the majority of LGBTIQ+ users prefer to access services as opposed to public health facilities. The advocacy and activism emanating from LGBTIQ+ civil society organisations emphasises a rights based approach to (health) care to ensure equity and access to appropriate health services – this should be at the core or health provider training country-wide.

#### **4. HIV**

There have been breakthroughs in HIV prevention, treatment programme implementation and human rights realisation, which makes "an AIDS free generation" possible. However, the uptake, adaptation, and successful use of these innovations are hindered by ever-persistent HIV-related stigma [14]. To date, only two studies surveyed stigma experienced by PLHIV. Using the Stigma Index, 799 PLHIV were surveyed in the O. R. Tambo district of the Eastern Cape, in 2012. This was followed by the 2014 survey of over 10,000 PLHIV, across 18 districts (2 per province) in South Africa. Both surveys showed continued significant levels of HIV-related externalised (where stigma or unfair treatment is experienced) and internalised stigma (where stigma, discrimination or negative treatment by others is anticipated or expected) reported by PLHIV [15, 16]. The 2017 national population-based household HIV survey showed mainly positive attitudes toward PLHIV [17], which may be reflective of the improved HIV knowledge in the same survey and even the possible awareness of political correctness around reporting stigma. However, HIV-related stigma still persist and those who experience internalised stigma remain silenced due to fear of stigma. In an effort to mitigate stigma, treatment initiation and disclosure is delayed which nullifies positive prevention efforts.

#### **5. Intersectionality of stigma**

Stigma is often experienced on a continuum where race, HIV status, mental health and SOGI intersects [6, 7]. Experiences of stigma, whether real or imagined may influence an individual's health seeking behaviour, which may result in a diminished quality of life. Thus, while we progress toward effective treatment and management of HIV, a greater understanding of mental illness and a more inclusive society in terms of SOGI, social and structural dynamics and determinants of health including stigma are just as important when aiming to improve health outcomes [6].

The multi-layered nature of stigma makes the design and implementation of stigma-reduction interventions more challenging. Addressing stigma on multiple levels is complex and may require greater resources, and be more burdensome to implement successfully amongst all target groups [7]. The greatest impacts in addressing stigma and discrimination have been observed when national responses employ a range of approaches that are monitored, evaluated and re-designed where necessary [6, 14].

#### **6. Recommendations**

In reflecting on the current influence of social stigma on the health of South Africans, the country has institutionalised policies for the reduction of stigma for people with mental health conditions as well as those living with HIV, while we are still in the process of developing progressive policies and laws around health care that promotes all SOGI. In view of continued social stigma, we propose the following recommendations for policy development as well as programmatic implementation.

Policy development level:


Implementation level:


*Implications of Social Stigma on the Health Outcomes of Marginalised Groups DOI: http://dx.doi.org/10.5772/intechopen.104423*


#### **Author details**

Jacqueline Carol Matthews-Mthembu1 \* and Gadija Khan2

1 eMterprise Consultancy, Pretoria, South Africa

2 University of the Western Cape, Cape Town, South Africa

\*Address all correspondence to: jacquemthembu@gmail.com

© 2022 The Author(s). Licensee IntechOpen. This chapter is distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

### **References**

[1] Goffman E. Embarrassment and Social Organization. 1963

[2] Hatzenbuehler ML, Phelan JO, Link BG. Stigma as a fundamental cause of population health inequalities. American Journal of Public Health. 2013;**103**(5):813-821

[3] Mthembu JC. Negotiating masculinities: Studying risk behaviours associated with performances of 'coloured' masculinities. 2015

[4] Frost DM. Social stigma and its consequences for the socially stigmatized. Social and Personality Psychology Compass. 2011;**5**(11):824-839. DOI: 10.1111/j.1751-9004.2011.00394.x

[5] Egbe CO, Brooke-Sumner C, Kathree T, Selohilwe O, Thornicroft G, Petersen I. Psychiatric stigma and discrimination in South Africa: Perspectives from key stakeholders. BMC Psychiatry. 2014;**14**(1):1-14. DOI: 10.1186/1471- 244X-14-191

[6] Kane JC, Elafros MA, Murray SM, Mitchell EMH, Augustinavicius JL, Causevic S, et al. A scoping review of health-related stigma outcomes for high-burden diseases in low- and middle-income countries. BMC Medicine. 2019;**17**(1):17. DOI: 10.1186/ s12916-019-1250-8

[7] Rao D, Elshafei A, Nguyen M, Hatzenbuehler ML, Frey S, Go VF. A systematic review of multi-level stigma interventions: State of the science and future directions. BMC Medicine. 2019;**17**(1):1-11. DOI: 10.1186/ s12916-018-1244-y

[8] Manago B. Understanding the Social Norms, Attitudes, Beliefs, and Behaviors Towards Mental Illness in the United States. Proceedings of the National Academy of Sciences; Indiana University. 2015 (September)

[9] Rispel LC, Metcalf CA. Breaking the silence: South African HIV policies and the needs of men who have sex with men. Reproductive Health Matters. 2009;**17**(33):133-142. DOI: 10.1016/ S0968-8080(09)33442-4

[10] Egbe CO, Brooke-Sumner C, Kathree T, Selohilwe O, Thornicroft G, Petersen I. Psychiatric stigma and discrimination in South Africa: perspectives from key stakeholders. BMC Psychiatry. 2014;**14**(1):1-14

[11] Luvuno ZP, Mchunu G, Ngidi H, Ncama B, Mashamba-Thompson T. Evidence of interventions for improving healthcare access for lesbian, gay, bisexual and transgender people in South Africa: A scoping review. African Journal of Primary Health Care & Family Medicine. 2019;**11**(1):1-10

[12] Knaak S, Mantler E, Szeto A. Mental illness-related stigma in healthcare: Barriers to access and care and evidencebased solutions. Healthcare Management Forum. Mar 2017;**30**(2):111-116. DOI: 10.1177/0840470416679413. Epub 2017 Feb 16. PMID: 28929889; PMCID: PMC5347358

[13] Cloete A, Sanger N, Simbayi LC. Are HIV positive women who have sex with women (WSW) an unrecognized and neglected HIV risk group in South Africa? Journal of AIDS and HIV Research. 2011;**3**(1):1-5

[14] Paul Pronyk B, Lutz B. Policy and Programme Responses for Addressing the Structural Determinants of HIV AIDS Support and Technical Assistance *Implications of Social Stigma on the Health Outcomes of Marginalised Groups DOI: http://dx.doi.org/10.5772/intechopen.104423*

Resources Project Recommended Citation. 2013 (June). Available from: http://strive.lshtm.ac.uk/

[15] Simbayi L, Zuma K, Cloete A, Jooste S, Zimela S, Blose S, et al. The people: Living with HIV stigma index: South Africa. 2014: Summary Report; 2015

[16] Boyle MP. Enacted stigma and felt stigma experienced by adults who stutter. Journal of Communication Disorders. 2018;**73**:50-61

[17] Simbayi L, Zuma K, Zungu N, Moyo S, Marinda E, Jooste S, et al. South african national HIV prevalence, incidence, behaviour and communication survey 2017. Towards Achieving the UNAIDS 90-90-90 Targets. 2019

### Section 6

## Human Rights and Health Rights

#### **Chapter 11**

## The Global Impact of HIV/AIDS on the Realisation of Health Rights

*Nirmala Pillay*

#### **Abstract**

The chapter critically examines the extent to which the HIV/AIDS litigation advanced the prevention, control and treatment of HIV/AIDS and the realisation of health rights. The justiciability of socio-economic (SC) rights underpins the discussion on health rights but questions about justiciability still leaves unanswered the enforceability of measures against duty bearers to achieve health equity so that vulnerable communities, bearing the greatest burden of HIV/AIDS, are targeted. Advancing health rights through the courts highlights the limitations of law as a human rights tool in holding duty bearers accountable.1 Ultimately, the full realisation of health rights to achieve health equity may require rights-based approaches to be embedded across public and private health service delivery, research, national strategies, and plans.

**Keywords:** health rights, law, justiciability, HRBA

#### **1. Introduction**

Irrespective of the advances made in science in the form of therapies and drugs, the public health challenge posed by deadly infectious diseases is targeting those who are most susceptible with appropriate strategies to prevent, control and treat the disease. This chapter critically examines the challenges HIV/AIDS posed for the most vulnerable communities and the impact of HIV/AIDS litigation on advancing the health rights of those most affected. HIV/AIDS produced an impressive amount of litigation especially in the late 1990s and early 2000s. Several landmark judgements materially advanced the health rights of the litigants with far reaching implications for people living with HIV (PLHIV). This success contributed to a general view that the justiciability of health rights, a key socio-economic (SC) right was being advanced by the courts and this will make a material difference to states' taking their obligations seriously and holding states accountable. If the human rights legal framework were strengthened so that SC rights achieved the same standing as civil and political (CP) rights, enjoying the same levels of justiciability, then equal health for all will be easier to achieve. The argument presupposes a central role for the courts. This chapter examines health rights in the context of international human rights law (IHRL), the

<sup>1</sup> Courting Rights: Case Studies in Litigating the Human Rights of People Living with HIV. Published jointly by the Canadian HIV/AIDS Legal Network and the Joint UN Programme on HIV/AIDS, UNAIDS/06.01E, March 2006. p. 8.

extent of the gains made by HIV/AIDs litigation for the judicialization of the right and the implications of this for addressing the health inequalities that underpin HIV/AIDS. The chapter is divided into three parts. The first part discusses the global response to HIV/AIDS and the challenge HIV/AIDS poses to public health efforts; the second with the realisation of health rights through HIV/AIDS litigation, and the third discusses broader human rights-based approaches (HRBA) to HIV/AIDS that focus on the underlying determinants of health to address health inequities.

#### **2. Global response to HIV/AIDS**

Since the beginning of the epidemic 84.2 million people were infected with the HIV virus and about 40.1 million people died from AIDs.2 As startling as these figures are the yearly tally of people infected with HIV has dramatically fallen in part because of the development of antiretroviral treatment (HAART) and pre-exposure prophylaxis (PrEP).3 These therapies are vital to attempts by public health authorities to bring HIV and AIDS under control. The drugs prevent people at risk from contracting HIV and dramatically reduces morbidity from AIDS of those infected with HIV. At the end of 2021 75% of PLHIV were accessing anti-retroviral drugs, up from 25% in 2010. There were 1.3 million pregnant women with HIV in 2021 of which an estimated 81% received anti-retroviral drugs to prevent mother-to-child transmission. Between 2010 and 2021, the number of children living with globally HIV decreased from 2.5 million to 1.7 million.4 Yet, this impressive success was also the result of concerted efforts by PLHIV to access treatment. The figures also obscure the persistence of the underlying conditions that lead to high rates of HIV/AIDS and continue to inhibit access to treatment or prevent the rise of new infections. In 2021 there were still 38.4 million PLHIV and 650 000 deaths. Alarmingly, 1.5 million new infections were recorded in 2021 alone.5 Although HIV remains a problem in both first world and developing countries, it is the latter, especially Africa, that bears the biggest burden of the disease accounting for two thirds of PLHIV worldwide.6 Early in the pandemic it became apparent that the poorest and most unequal societies bore the brunt of HIV/AIDs infection. The inequitable distribution of health care that was "available, accessible or of good quality"<sup>7</sup> affected mostly people afflicted by poverty, illiteracy, and discrimination and lead directly to high rates of infection, predominantly among women, and high rates generally.

In the first five years of the HIV/AIDS pandemic, governments across the world, the public and employers, motivated by ignorance and the fact that the disease seemed endemic to "risk groups" tried to prevent transmission with measures such as mandatory testing, isolation, detention, and quarantine. This meant that infected people suffered "the double jeopardy of disease and discrimination" [1]. Stigmatising individuals and groups did not have the desired effect of slowing down transmission because infected people avoided treatment. This affected the ability of public

<sup>2</sup> WHO The Global Health Observatory, who.int/data/glo/data/themes/hiv-aids

<sup>3</sup> PrEP is the "provision of antiviral medication to uninfected persons that reduces transmission by 99% among men who have sex with men (MSM)".

<sup>4</sup> Global HIV and AIDS statistics-Fact Sheet – UNAIDS.

<sup>5</sup> Global HIV and AIDS statistics-Fact Sheet – UNAIDS.

<sup>6</sup> Global HIV and AIDS statistics-Fact Sheet – UNAIDS.

<sup>7</sup> WHO Human Rights and Health wto.int.

#### *The Global Impact of HIV/AIDS on the Realisation of Health Rights DOI: http://dx.doi.org/10.5772/intechopen.109382*

authorities to bring the disease under greater control regardless of the availability of sophisticated therapies [2]. HIV/AIDs advocacy groups and activists, including those with HIV, changed attitudes to the disease, locally and internationally, by drawing attention to the human rights dimension of the pandemic [2]. Allan Brandt observed that "AIDS activists…served as collaborators and colleagues rather than constituents and subjects, changing the trajectory of research and treatment" [1]. Inequitable access to treatment had relegated some communities to the margins of prevention and control strategies. Better approaches to tackling the disease were needed that would pinpoint the most vulnerable communities. In other words, approaches that would address both the underlying determinants of health that cause greater susceptibility among some groups and access to therapies.

The work of advocacy groups and a new approach that paid attention to the human rights of PLHIV, adopted by the first director of the (WHO) Global Program on AIDS, Jonathan Mann, linked human rights directly to prevention and control strategies to bring the pandemic under control. If people with HIV/AIDS were marginalised and their human rights denied, this would drive the disease underground where it would be impossible to manage and would spread. Mann argued that to treat the infected would protect society. Thus, epidemiological, and clinical approaches to HIV/AIDS became inextricably intertwined with the protection of human rights [1]. HIV/AIDS brought together health and human rights in a way that was not obvious before. According to Michael Kirkby the "linkage between human rights and effective HIV prevention and care is "more than a moral imperative …it [is] an epidemiological necessity."8 It accelerated the development of global health initiatives as the scale of the disease and its impact on the world, especially in developing countries, necessitated co-ordinated medical, financial and policy responses. The approach taken by the UN, from the 1990s, onward was to try and embed human rights in strategies for tackling HIV/AIDS. A co-ordinated international effort was undertaken through a series of measures: In 1996 the Joint United Nations Program on HIV/AIDS (UNAIDS) was created bringing together the world's public health officials, community leaders and politicians [5, p. 2210]. Five years later, in 2001, the UN General Assembly made its Declaration of Commitment on HIV/AIDS which they renewed in 2011. This led to the creation of the Global Fund to Fight AIDS, Tuberculosis, and Malaria targeted at providing financial support to the prevention, control and treatment of HIV/AIDs in developing countries. The USA, under President George W. Bush also made a major funding intervention in 2003 with the President's Emergency Plan for AIDS Relief (PEPFAR) as lifesaving drugs were too expensive to scale up for national roll outs in middle-and low-income countries [6].

#### **3. Human rights norms and public health**

Human rights are protected in international law in the Universal Declaration of Human Rights (UDHR), two legally binding international covenants: the International Convention of Civil and Political Rights (ICCPR) and the International Convention of Economic, Social and Cultural Rights (ICESCR), and numerous regional treaties. While CP

and SC rights are treated as qualitatively different, they are fundamental to public health in different ways. Public health authorities have some powers to restrict the

<sup>8</sup> [3] quoted in [4].

fundamental rights of people when circumstances warrant it. They are empowered by national and international law to take measures to prevent, control and treat infectious and contagious diseases such as HIV/AIDS. Within democracies at least, the limits of those powers are also set out to avoid any unnecessary restrictions on the rights of individuals in the pursuit of the laudable goal of protecting the nation's health. The ICCPR ensures that only reasonable restrictions and derogations from rights are acceptable if circumstances demand them.9 The criteria for the limitation or restriction of rights under the ICCPR by public health authorities is set out in the Siracusa Principles.10 For example, public health emergencies may provide grounds for limiting certain rights when the rationale for the restriction is the protection of the nation's health. It is legitimate, under IHRL to institute quarantine restrictions that breach the right to freedom of movement of people infected with serious communicable diseases such as Ebola fever, dengue fever, SARS, syphilis, typhoid or tuberculosis, provided they meet the criteria for restrictions [7]. These criteria are standards of legality, evidence-based necessity, proportionality, and gradualism; are of limited duration and subject to review.11

The ICESCR also includes a limitation clause (Article 4) intended to protect the rights of individuals. In General Comment No. 14 on the right to health the Committee highlighted PLHIV to explain the limitation. "…a state party which, for example, restricts the movement of, or incarcerates, persons with transmissible diseases such as HIV/AIDS…on grounds such as national security or the preservation of public order… must do so in accordance with the law, international human rights standards, in the interest of legitimate aims pursued, and "strictly necessary for the promotion of the general welfare in a democratic society".12 Despite these limited restrictions to fundamental rights, the rights of PLHIV were frequently breached. They challenged the breaches of their civil liberties, fundamental freedoms, and rights in various jurisdictions.13 However, challenging discrimination against PLHIV for their HIV status in employment or club membership or breaches of privacy and confidentiality, at an individual level, does not promote the health rights of HIV sufferers nor does it help deliver the requisite treatment, or bring the disease under control. This requires that the health rights of PLHIV are respected, protected and fulfilled.14

<sup>9</sup> Absolute rights in the ICCPR, such as the prohibition against torture, slavery, and genocide may not be restricted under any circumstances and bind all states even those who have not signed up to the treaties. <sup>10</sup> Siracusa Principles on the Limitation and Derogation Provisions ion the international covenant on Civil

and Political Rights. American Association for the International Commission of Jurists icj.org

<sup>11</sup> [8]. See also para 29 General Comment No. 14. In line with Article 5.1, such limitations must be proportional, i.e. the least restrictive alternative must be adopted where several types of limitations are available. Even where such limitations are …permitted, they should be of limited duration and subject to review. <sup>12</sup> CESCR General Comment on the Right to the Highest Attainable Standard of Health, (2000), General Comment No. 14, U.N. Doc. E/C. 12/2000/4. 2 para 30.

<sup>13</sup> See for example: *Canada (Attorney General) v Thwaites,* [1994] 3 FC 38 (Federal Court of Canada – Trail Division, 1994); *XX v. Gun Club Corporation et al*., Constitutional Court, Judgement No. SU-256/96 (1996); *A,C & Others v Union of India & Others,* High Court of Judicature at Bombay [Mumbai], Writ Petition No. 1322 of 1999; *JRB et al v. Ministry of Defence,* Case No. 14000, Supreme Court of Justice of Venezuela (Political-Administrative Bench) (1998); *Hoffmann v South African Airways*, Constitutional Court of South Africa, Case CCT 17/00 (2000); 2001 (1) SA 1 (CC); 2000 (11) BCLR 1235 (CC); *Diau v. Botswana Building Society* (BBS), Case No IC 50/2003, Industrial Court of Botswana (2003).

<sup>14</sup> CESCR General Comment on the Right to the Highest Attainable Standard of Health, (2000), General Comment No. 14, U.N. Doc. E/C. 12/2000/4.

#### **4. Health rights and states obligations in international law**

It is the responsibility of the state to implement the rights of both Covenants. Yet, despite signing up to targets to reduce HIV such as the MDGs and the commitment to eradicate HIV in 2030 and the SDGs,15 governments responded with limited urgency to adopt strategies to address the health rights of HIV sufferers who were mainly among the poorest. In the early 1990s the rate of litigation by PLHIV soared. The cases involved mainly access to treatment, especially to antiretroviral treatments (ART) and were based on the right to health guarantees of national constitutions and right to health provisions in international law. The resulting jurisprudence produced the optimistic assessment that the justiciability of health rights was being accelerated through HIV litigation. The HIV/ AIDS highlighted what a constitutionally enforceable health right could mean for the lives and dignity of people but a closer look at the right to health as an international legal norm and HIV case law is instructive with respect to revealing the scope and limitations of the litigation for the realisation of the right to health in all its aspects.

The right to health was first described in 1946 by the WHO constitution as "a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity" [9]. This definition is broad, all-encompassing, and not possible to operationalise.16 Article 12 of the ICESCR, that opened for signature in 1966, defines the right to health more precisely. "The state parties to the present covenant recognise the right of everyone to the enjoyment of the highest attainable standard of physical and mental health."17 The steps states need to take to achieve the full realisation of the right are spelt out. The following are directly relevant to PLHIV:


Unfortunately, the formulation is weak as State parties are only required to "recognise" the right to health. Furthermore, Article 2 stipulates that state parties will undertake to the "maximum of available resources" to achieve progressively the full realization of the rights in the covenant".19 The formulation is not an urgent imperative for states to address the underlying determinants and reasons for poor health

<sup>15</sup> There are 10 Sustainable Development Goals (SDGs) for ending AIDS that refer mainly to the underlying conditions that determine health. The third SDG is to end AIDS by 2030 unaids.org; the Millennium Development Goals has two HIV targets – to ensure access to treatment by those in need by 2010 and to reverse the spread of AIDS by 2015.un.org

<sup>16</sup> See [10].

<sup>17</sup> International Covenant on Economic, Social and Cultural Rights. Adopted 16 December 1966 GA Res 2200A(XXI). Ohchr.org

<sup>18</sup> UN Article 12 International Covenant on Economic, Social and Cultural Rights, (Dec 1966) G.A.Res 2200 (XXI) Art 12, U.N. Doc. A/6316.

<sup>19</sup> Article 2, International Covenant on Economic, Social and Cultural Rights. Adopted 16 December 1966 GA Res 2200A(XXI). Ohchr.org

outcomes. The 1978 Declaration of Alma-Ata on Primary Health Care came closer to treating health as a social goal involving not only the health sector but other social and economic sectors as well.20 The declaration emphasised correctly that health rights involved the creation of health systems that "ensure effective and equitable distribution of resources for maintaining health" [11, p. 4]. Imposing obligations on states was being developed in international law, however, it remained unclear what obligations the right to health as a legal norm imposed on states and in what ways states were accountable to move the right from concept to implementation.<sup>21</sup>

In the 1990s the HIV/AIDS pandemic produced a spate of health litigation globally that forced courts in several jurisdictions to implement constitutional and international law provisions on health rights. The cases were connected to PLHIV being denied the new life-saving antiretroviral therapy [12]. "The uniqueness of HIV/AIDS as a threat to public health on a global scale, the availability of life-saving ART drugs, and inclusion of SC rights in constitutions in various countries either as directly justiciable or directive principles, created the perfect environment for the rise of right to health litigation. One researcher found that 110 national constitutions make reference to a right to health care [13]. For example, South Africa (SA) and Brazil included the right to health, in their constitution as directly justiciable;22 and the UDHR and the ICESCR are entrenched in the constitution of Argentina.<sup>23</sup>

In several significant judgements in various jurisdictions courts ruled in favour of the applicants basing their rulings on violations of fundamental rights and the positive obligations of the state that flow from health rights. In several instances the courts creatively interpreted the constitutional rights of individuals even when there was no directly applicable right in the national law. In the *Alonso Munoz Ceballon* case*,* the Columbian Constitutional Court,24 in a first judgement of its kind in Latin America, held that the Institute of Social Security could not withhold treatment for HIV/AIDS that the applicant had been receiving. The court based its ruling on the Columbian constitution that required the state to take positive steps to promote the conditions necessary for health equality especially for groups in need or those who are marginalised. In a ruling on the right to free access to health care services and freedom from discrimination based on HIV/AIDS status, the court could not rely on the non-discrimination provisions of Columbian law as the national law does not prohibit discrimination based on disability. The court relied instead on the equality provision which entitled the applicant to equal access to health care-benefits and held that withdrawing treatment would have been discriminatory. Similar conclusions were reached by the Costa Rican courts in the *Luis Guillermo Murrillo Rodriguez et al* and *William Garcia Alvarez* cases. 25 The applicants argued that their constitutional right to life was being violated if they were denied access to ART. The Costa Rican court reversed a previous decision that refused to order the Costa Rican Social Security Fund to supply medication because of the costs involved and ruled in favour of the applicants.

<sup>20</sup> Declaration of Alma Ata 1978. WHO and the United Nations Children's Fund. Unicef.org

<sup>21</sup> Article 16 International Covenant on Economic, Social and Cultural Rights. Adopted 16 December 1966 GA Res 2200A(XXI). Ohchr.org

<sup>22</sup> 13 successful lawsuits in Latin America until 2000.

<sup>23</sup> Article 75.22. [14, p. 26]. See also [15].

<sup>24</sup> *Alonso Munoz Ceballon v Instituto de Seguros Sociales constitutional a Court of Columbia,* Judgement No. T-484-92 (1992).

<sup>25</sup> *Luis Guillermo Murrillo Rodriguez et al* v Caja Costarricence de Seguro Social, Constitutional Chamber of the Supreme Court of Justice, Decision No. 6096-97 (1997); *William Garcia Alvarez v Caja Costarricense de Seguro Social,* Constitutional Chamber of the Supreme Court of Justice, Decision No 5934-97 (1997).

#### *The Global Impact of HIV/AIDS on the Realisation of Health Rights DOI: http://dx.doi.org/10.5772/intechopen.109382*

The judgement noted that the cost of the medication had come down and that HIV was the main cause of death in Costa Rica. The court went further and ordered the Fund to develop a plan to provide ART coverage to all PLHIV in need of the treatment.26

The case is interesting for the factors the court considered in its ruling. The court took into account the cost and efficacy of the available therapies; the impact of treatment on the health and lives of PLHIV and the fact that HIV was a major cause of death in Costa Rica. The court ordered the government to take positive steps to roll out a national plan for PLHIV.

In the Venezuelan *Cruz del Valle Bermudez et al case*27 the applicants demanded HIV treatment and treatment for opportunistic infections basing their case on their rights to life and equality, health, liberty and security, freedom from discrimination and access to benefits of science and technology that were protected in the Venezuelan law. The way in which the court arrived at its conclusions is similar in many respects to the Columbian court. It rejected the inequality and discrimination claims on the basis that people with HIV were not in a worse position as people with other conditions. However, the court accepted the applicants' right to health and right to life arguments regarding both as positive rights. The state has a duty to ensure that plaintiffs health rights are protected, especially when the plaintiff lacks sufficient means. Rejecting the government's arguments that supplying ART to everyone who needs it would be very expensive, the court's wide-ranging order required the Ministry to develop policies, provide information and undertake research for PLHIV.

In addition to these national court decisions there was an important regional ruling by the Inter American Commission on health rights in the *Jorge Odir Miranda Cortez et al case.*28 This ruling was significant in raising the political profile of PLHIV. Several HIV sufferers with no access to ART petitioned the Supreme Court of El Salvador for relief. Frustrated with the the tardiness of the court in dealing with the issue the petitioners took their case to the inter-American Commission asking first for an interim order (*amparo)* compelling the Government of El Salvador to provide PLHIV with the necessary therapies and then for a ruling on the full merits of the case. The petitioners claimed discrimination based on their HIV status and a breach of their right to life saving therapies. The Commission ordered the El Salvador government to supply the treatment and medication, including the nutrition necessary for their immunity. However, before the Commission could rule on the merits of the case the national court of El Salvador ordered the Social Security Institute to provide the necessary ART. This was the first case before any regional court on access to medication for HIV. The impact of a ruling from an international human rights court prompted the EL Salvador court to make a decision and the law in El Salvador changed as well so that PLHIV would have a right to health care that included surgical and phycological treatment and measures to slow down the progression of the infection.29 The ruling had far reaching effects on the judgements of the national courts in Latin America and health activism for HIV in the region.30

<sup>26</sup> UN AIDS. Courting Rights. Case Studies in Litigating the Human Rights of People living with HIV.

<sup>27</sup> *Cruz del Valle Bermudez et al Ministry of Health and Social Action,* Supreme Court of Venezuela (Political-Administrative Chamber), Decision No. 916, Court File No. 15789 (1999).

<sup>28</sup> *Jorge Odir Miranda Cortez et al. v. El Salvador,* Inter-American Commission on Human Rights, Report No. 29/01, Case 12.249 (2001).

<sup>29</sup> Law on the Prevention and Control of the Infection caused by the Human Immunodeficiency Virus (Decree No 588, 24 October 2001), Article 5(a).

<sup>30</sup> See *AV & CM v. Ministerio de Salud de la Nacion,* Federal Civil & commercial Court (No. 7), 26 April 2002 where people living with HIV sought ART from the Ministry of Health.

These cases, including the Commission's ruling showed that the courts were willing, not only to uphold the rights of individuals but to force government departments to address the plight of PLHIV who were not the litigants. The courts treated the cases as class actions or collective rights holding governments accountable for not paying attention to groups of people for whom basic lifesaving drugs were inaccessible. According to Cabrera and Ayala "it is fair to state that HIV/AIDS-related litigation played a key role in shaping the right to health litigation at the global scale" [14, p. 27]. They are also right to point out that health rights litigation was a response to states' neglect of or inability to "adequately address the health needs of its people…" [14, p. 26].

In 2000, the CESCR published important clarifications on the right to health and states' responsibilities for realising health rights in General Comment No. 14. The case law on health rights discussed predates the Comment and clarified the approach the courts would take to the adjudication of health rights and the types of orders they were willing to make. The Comment 'codifies' this by requiring that states take deliberate, concrete and targeted measures, through legislative and other means to implement rights and tied this to benchmarks and reporting mechanisms.31 Importantly, for litigation purposes, the committee included the following formulation: "While the Covenant provides for progressive realisation and acknowledges the constraints due to the limits of available resources, it also imposes on state parties various obligations which are of *immediate effect*."32 The Comment emphasised that the state has immediate legal "obligations in relation to the right to health, such as the guarantee that the right will be exercised without discrimination of any kind (Article 2.2)."33 Additionally, the Comment clarified the implications of General Comment No. 3, that related to state obligations to implement the "core minimum" of SC rights, for health rights. The core obligations to fulfil health rights include, at a minimum: (a) the right of access to health facilities, goods and services on a non-discriminatory basis, especially for vulnerable or marginalised people; (b) access to the minimum essential food; (c) basic shelter, sanitation and potable water; (d) essential drugs; (e) equitable distribution of health facilities; (f) a national public health strategy and plan of action, including indicators and benchmarks… that prioritise marginalised groups. In its lengthy explanation of the meaning of non-discrimination as it relates to health, the committee stated that "even in times of severe resource constraints, the vulnerable members of society must be protected by the adoption of relatively low-cost targeted programmes."34 The right to health means no discrimination in the provision of health services, equality of access to health care and health services, and even obligations to provide health insurance and health care facilities for those without sufficient means. To achieve these outcomes states had to focus on the underlying determinants of health such as "nondiscrimination, health information, participation," and inhibiting cultural and social norms, such as gender inequality [11, p. 3]. The Comment tried to ensure that states were accountable and appropriately monitored in realising rights [16]. It distinguished

<sup>31</sup> CESCR General Comment on the Right to the Highest Attainable Standard of Health, (2000), General Comment No. 14, 30, U.N. Doc. E/C. 12/2000/4. See also General Comment on the Nature of States Parties Obligations, (1990) General comment No. 3 at 9, 130, U.N. Doc. E/1991/23.

<sup>32</sup> CESCR General Comment on the Right to the Highest Attainable Standard of Health, (2000), General Comment No. 14, U.N. Doc. E/C. 12/2000/4. 2 para 30.

<sup>33</sup> CESCR General Comment on the Right to the Highest Attainable Standard of Health, (2000), General Comment No. 14, U.N. Doc. E/C. 12/2000/4. 2 para 30.

<sup>34</sup> CESCR General Comment on the Right to the Highest Attainable Standard of Health, (2000), General Comment No. 14, U.N. Doc. E/C. 12/2000/4. para 18.

#### *The Global Impact of HIV/AIDS on the Realisation of Health Rights DOI: http://dx.doi.org/10.5772/intechopen.109382*

between steps states can take to realise some aspects of health rights immediately and positive actions using "maximum available resources" to progressively realise national public health strategies that address the health concerns of the whole population.35

The development of state obligations in General Comment No. 14 is consistent with the court's approach in two significant right to health cases from South Africa (SA), one of the worst afflicted countries with HIV/AIDS. Whether PLHIV manage to achieve access to ART is as much dependant on government responsibility to ensure that the least worse off get can also access the necessary treatment and affordability of national programmes for the supply of ART. This issue was the basis for a significant ruling on accessing ART in SA, The SA government amended its Medicines Act to make medicines more affordable. Several pharmaceutical companies challenged these amendments36 seeking a declaration that the changes were unconstitutional as it affected their property rights and were against WTO37 rules. Treatment Action Campaign (TAC), a national activist group, whose aim was to ensure access to treatment for PLHIV, were granted standing to join the defence as *amicus curiae* (friend of the court) to defend the constitutional rights of PLHIV "that were being undermined by the failure to implement the legislation's measures to reduce the price of medicines."38 TACs argument revolved around parallel importation of affordable drugs, cheaper generic substitution, and fair pricing. They claimed that the human right to access to health was not as important as the property rights of the petitioners, especially if patients were being abused. They made representation that ART and medicines that treat and prevent opportunistic infections should be made affordable and that government had a positive duty to take steps to ensure the accessibility of health, especially for the poor and marginalised. Additionally, TAC organised protests nationally and internationally and defiance campaigns against the pharmaceutical companies for price-gouging.39 The activism of TAC outside the court generated, an enormous amount of negative publicity which combined with the legal arguments produced a number of important successes directly relevant to health rights for PLHIV. The US President recognised the right of African countries to "enact legislation that seeks to improve access to medicines" although American interests (companies) are involved; the pharmaceutical companies bowed to pressure, dropped their objections to the amendments and withdrew the lawsuit agreeing to pay court costs40 ; and Pfizer donated Diflucan for the treatment of AIDS related opportunistic infections for use in the SA public health system. Despite the fact that the pharmaceutical companies withdrew their case before a ruling could be made, the courts had been

<sup>35</sup> CESCR, 2000 General Comment 14: The right to the highest attainable standard of health (Article 12 of the International Covenant on Economic, Social and Cultural Rights). Committee on Economic, Social and Cultural Rights (CESCR): Geneva, para 43.

<sup>36</sup> *Pharmaceutical Manufacturers' Association and 41 Others v. President of South Africa and 9 Others,* High Court of South Africa, Transvaal Provincial Division, Case No. 4183/98 (2001) *.*

<sup>37</sup> WTO Agreement on Trade-Related Aspects of the Intellectual Property Rights. https://www.wto.org/ english/docs\_e/legal\_e/27-trips\_01\_e.htm

<sup>38</sup> UNAIDS courting Rights Case Studies in Litigating the Human Rights of People Living with HIV. UNAIDS/06.01E p. 68.

<sup>39</sup> See also a 2003 case Hazel Tau 7 Others v GlaxoSmithKline and Boehringer Ingelheim, Competition Commission of South Africa (2003).

<sup>40</sup> Treatment Action Campaign homepage: http://www.tac.org.za/about.htm 14 Ibid. May 2002 | The International Guidelines on HIV-AIDS and Human Rights, 14.

used as an instrument of corrective and distributive justice.41 Mark Heywood claimed that that the victory emboldens "people in developing countries and around the world to stand up for medicines that are affordable" [17, p. 45].

TAC followed up on this victory with one of the most analysed cases on health rights and HIV/AIDs. In *Minister of Health and Others v Treatment Action Campaign and Others (No 2*) 42 the SA government appealed a successful legal challenge to their limited use of the ART drug, nevirapine, in the public sector and the absence of a national programme of action to prevent mother-to-child transmission of HIV.43 TAC relied on several constitutionally protected rights, namely, the "right to access healthcare services, including reproductive health care (Section 27) and children's' right to basic health care services (Section 28).44 They claimed that mothers and children were denied access to medication available free to patients in the private sector and a few public sector pilot programmes. TAC argued that the limited provision was unfair and breached the right of access to public health care services and the right of children to be afforded special protection.45 Also, they contended that the government is constitutionally obliged "to plan and implement an effective, comprehensive and progressive programme for the prevention of mother-to-child transmission of HIV throughout the country."46 The breach of this right meant that disease transmission and death rates would be disproportionate among the poor resulting is greater health inequity.

In addition to considering the legal disputes particular to this case, the Constitutional Court considered several points of law about the nature of SC rights important for an assessment of how far the judiciary is prepared to go in enforcing SC rights and by extension health rights: (a) do SC rights give rise to individual rights and claims, (b) the difference between individual entitlements and government obligations to meet "core minimum" SC rights. The case makes no reference to IHRL but is based on Section 27(1)47 of the SA Bill of Rights that incorporates a positive right to health with similar in wording in parts to Article 12 ICESCR.

The government did not contest the justiciability of ESC rights since this was constitutionally protected and there was established precedent. Their defence was based on the doctrine of the separation of powers.48 Courts have a different role in a democracy from the legislature and the executive, and it is the executive that is tasked with formulating health policies. Courts should show due deference to this and take care not to make an order that would have the effect of requiring the executive to

<sup>48</sup> *Grootboom etc.*

<sup>41</sup> Treatment Action Campaign homepage: http://www.tac.org.za/about.htm 14 Ibid. May 2002 | The International Guidelines on HIV-AIDS and Human Rights, 14.

<sup>42</sup> Minister of Health and Others v Treatment Action Campaign and Others (No 2) (CCt8/02) [2002] ZAACC 15; 2002 (5) SA 721; 2002 (10) BCLR (5 July 2002).

<sup>43</sup> Minister of Health and Others v Treatment Action Campaign and Others (No 2) (CCt8/02) [2002] ZAACC 15; 2002 (5) SA 721; 2002 (10) BCLR (5 July 2002).

<sup>44</sup> Para 22.14. They also argued that the government violated a binding 8 (I) constitutional provision requiring the state to "protect, promote and fulfil the rights in the Bill of Rights" and was in breach of its international human rights treaty obligations.

<sup>45</sup> Sections 27 and 28 of the SA Constitution.

<sup>46</sup> Minister of Health and Others v Treatment Action Campaign and Others (No 2) (CCt8/02) [2002] ZAACC 15; 2002 (5) SA 721; 2002 (10) BCLR (5 July 2002) para 4.

<sup>47</sup> The right to have access to (a) health care services, including reproductive health care; and (2) The state must take reasonable legislative and other measures, within *its available resources*, to achieve the *progressive realisation* of each of these rights".

#### *The Global Impact of HIV/AIDS on the Realisation of Health Rights DOI: http://dx.doi.org/10.5772/intechopen.109382*

pursue a particular policy.49 This would undermine the notion of the separation of powers. The government further argued that "courts are ill-suited to adjudicate upon issues where court orders could have multiple social and economic consequences for the community."<sup>50</sup>

Rejecting the idea that Section 27(1) gave rise to "a self-standing, independent positive, enforceable right," the court held that the right to health is about the scope of positive rights and, in this case, "access to services that the state is obliged to provide."51 The SA government had fallen short of its constitutional obligations to provide access to health care services for HIV-positive mothers and their new-born babies.52 The court ruled that since a whole class of persons were excluded, this was a denial of rights. Even though the court did not rely on international law, the reasoning reflects the non-discrimination, "core minimum" provisions of SC rights that are immediately justiciable and not subject to "progressive implementation". The court also ruled that the government had failed in its responsibilities by not setting out a "timeframe for a national programme to prevent mother child transmission of HIV."53 The judgement recognised that the state balances health rights with other SC rights such as education, land, housing, health care, food, water and social security, but the state must also take "reasonable legislative and other measures *within its available resources* to achieve the *progressive realisation* of each of them."54 Therefore, legislation and policies need to be reasonable and "programmes must be reasonably implemented" to comply with the State's obligations.55 The ruling confirmed that states will be held accountable for not setting out benchmarks and indicators with "timeframes" for positive rights. The ruling marked a watershed for the adjudication of health rights in SA and globally. For many commentators the ruling also exemplified a "transformative" constitution that could achieve concrete results for PLHIV [18]. According to Cooper, the justiciability of SC combined with the urgency of the HIV/AIDs crisis "placed the right to health at the centre of promoting social justice and framed litigation as a mode of social transformation in South Africa" [19].56

While the HIV case law should not be underestimated, it is also important not to overestimate its achievements. The extent to which HIV litigation expanded the

<sup>49</sup> *Minister of Health and Others v Treatment Action Campaign and Others* (No 2) (CCt8/02) [2002] ZAACC 15; 2002 (5) SA 721; 2002 (10) BCLR (5 July 2002).

<sup>50</sup> *Minister of Health and Others v Treatment Action Campaign and Others* (No 2) (CCt8/02) [2002] ZAACC 15; 2002 (5) SA 721; 2002 (10) BCLR (5 July 2002).

<sup>51</sup> See Sections 26(2) and 27(2) of the SA constitution.

<sup>52</sup> *Minister of Health and Others v Treatment Action Campaign and Others* (No 2) (CCt8/02) [2002] ZAACC 15; 2002 (5) SA 721; 2002 (10) BCLR (5 July 2002) para 4.

<sup>53</sup> Minister of Health and Others v Treatment Action Campaign and Others (No 2) (CCt8/02) [2002] ZAACC 15; 2002 (5) SA 721; 2002 (10) BCLR (5 July 2002) para 3.

<sup>54</sup> Minister of Health and Others v Treatment Action Campaign and Others (No 2) (CCt8/02) [2002] ZAACC 15; 2002 (5) SA 721; 2002 (10) BCLR (5 July 2002) para 4.

<sup>55</sup> Minister of Health and Others v Treatment Action Campaign and Others (No 2) (CCt8/02) [2002] ZAACC 15; 2002 (5) SA 721; 2002 (10) BCLR (5 July 2002) para 4.

<sup>56</sup> [14, p. 27], [19]. See also Brand a "[T]ransformative constitutionalism emphasises attaining SC justice by having a pro-poor (or anti-poverty) orientation that focuses on addressing inequalities. [20]. The imperative for the court when interpreting the law, is to deploy constitutionally entrenched human rights to transform the lives of all SAs. [21]. Former Chief Justice Langa went even further in stating that "that at the heart of transformative constitutionalism is the objective to create a truly equal society and 'to heal the wounds of the past and guide us to a better future.' (Langa 2006: 352 quoted in [21]).

right to health is related to the question of the suitability of the law and the efficacy of courts in addressing all the components of health rights. The right to health has both justiciable and non-justiciable elements and the role of the court is to both adjudicate on breaches of rights where the violation is clear and hold governments accountable for duties that only the executive can undertake. The latter role involves monitoring States for accountability for treaty obligations that do not form part of the non-justiciable "core minimum." The general assumption is that since rights are legal entitlements the more effective the adjudication of health rights becomes through the courts, and the more the differences between CP and SC rights are reduced, the better the health outcomes for those suffering the biggest burden of disease. The differences between CP and SC rights are not as great as once presumed and there is a significant body of literature on this question, but the pressing issue is how far the courts are able to protect the right to health in all its aspects. In other words, how effective is the law as a human rights tool.

The cases before the courts were clearly defined and generally involved access to medication. There was a clear causal link between having access to ART and life. In the *Jorge Odir Miranda Cortez* case 10 of the original 36 petitioners died even before a judgement could be rendered. The urgency of the issues before the courts and the resulting impact on the lives and health of large numbers of people, if the cases were unsuccessful, would have been apparent to any judiciary. HIV case law in Latin America and SA was important for the impact the rulings had on the lives of PLHIV, especially in developing countries and for those who could not afford ART; and for developing the legal framework of the right to health. It showed:


The litigation on HIV/AIDs demonstrated the justiciability of health rights but it is important to consider how effective the courts were and how far the jurisprudence went in protecting the health rights of PLHIV and in helping to bring down new infections. The reasoning of the courts in the cases discussed are interesting as they often applied a combination of rights provisions in their reasoning. For example, interpreting the right to life positively, relying on anti-discrimination provisions and in one instant on the right to S&T, to grant the petitioners relief. Additionally, the rulings of the court were largely engaged with "core minimum" justiciable sections of General Comment No. 14 such as the non-discrimination clauses, equal access to

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medication and health services57 and prioritising of the rights of children.58 These rights are immediately justiciable and not "progressively realised."59 Yet, successful litigation often did not produce the necessary relief for the applicants. Delivery of accessible treatment, properly financed, did not follow court orders and the law failed to solve the access to medication issue. Ultimately, it is the executive that must devise the policies to implement rights. In Argentina, for example, successful court cases that imposed a positive duty on governments to supply PLHIV with ART had disappointing results and in SA it was a long time before the country achieved a successful rollout of ART that also included a plan to stop mother-to-child transmission. As Heywood pointed out in the TAC case, it was still up to the SA government to demonstrate commitment by making good on the ruling and on their constitutional obligations to ensure that any new act will be effective in making treatment accessible [22]. The rollout of nevirapine was patchy with some SA provinces significantly increasing access and others failing to do so children continued to be infected. Governments were not always able or willing to commit resources or address systemic problems in the health care sector. Too often litigants had to follow up legal action with more legal action to compel states to comply with previous orders.

The implementation of SC rights, with serious implications for PLHIV, cannot be left up to governments without international accountability mechanisms through the UN and local accountability through the courts. The Universal Periodic Review and other UN monitoring systems require governments to report on progress made on the implementation of SC rights, including the right to health. When governments still fail to implement at least the core minimum of the right, the courts can intervene. But discrete intervention of the courts only in instances when individuals and groups are successful in getting their cases heard make for uneven attempts to provide relief to marginalised communities suffering the highest burden of the disease. The courts should be the last resort in forcing governments to act and cannot be the only means of ensuring attention to human rights within the public health system.

The development of a legally binding right to health in national constitutions made it easier for courts to hold governments accountable for the justiciable elements of the right but they are careful in their interventions. The HIV cases reveal that the courts acted in a supervisory capacity, within their administrative law remit, and held the executive accountable for omissions in their constitutional duties. The role of the courts is to evaluate whether the measures the government takes to meet its constitutional obligations are reasonable. This approach restricts the judiciary to its proper role in a democracy and prevents the judiciary from intruding on the role of the executive. "In this way the judicial, legislative and executive functions achieve appropriate constitutional balance."60 However, accountability is a central plank of rights discourse, litigation does not seem effective in holding governments' accountable for addressing the underlying determinants of health. The HIV case law highlighted the

<sup>57</sup> CESCR, General Comment No. 3: The Nature of State Parties Obligations (Art. 2. Para 1, of the Covenant. E/1991/23.

<sup>58</sup> [20, p. 124]. The exception is in the case of children, where the court has recognised in the Grootboom (right to housing) and TAC (right to healthcare) cases amongst others that the state has a special duty to protect and uphold the rights of children, especially in circumstances where parents are unable to fulfil their obligations towards their children.".

<sup>59</sup> General Comment No. 14.

<sup>60</sup> *Minister of Health and Others v Treatment Action Campaign and Others* (No 2) (CCt8/02) [2002] ZAACC 15; 2002 (5) SA 721; 2002 (10) BCLR (5 July 2002) .

extent to which the burden of disease fell on the poorest and most vulnerable as most PLHIV are the victims of chronic health inequities.

The main themes of this debate are well rehearsed and revolve around the appropriate spheres of the judiciary, legislature, and the executive; and the appropriateness of the courts to make orders that have major budgetary implications. Restricting the role of the courts is reasonable if the full scope of health rights, that includes unaccounted for environmental and social factors, that have an impact on health, is considered. There are, therefore, built in limitations to the role of the judiciary in the expansion of health rights and there are good reasons not to expect an ever-expanding role for the courts to implement SC rights. A former UK High Court justice, Lord Sumption, highlighted an added danger of an overreaching judiciary in his Reith lectures. He posed the question, "How far is it legitimate for democracies to create a body of law that is independent of democratic choice and protected against abrogation and amendment by a democratic legislature" [17].61

Sumption's question is not about the justiciability of SC v CP rights, or the proper function of the courts, but the proper limits of human rights law [17, p. 47]. He acknowledges that the law plays an important role in holding the executive accountable and can even act as a corrective, but he raises a concern about the creation of an "empire of law" where an expanded idea of the rule of law means that courts can claim a "wider supervisory authority over other organs of the state" [17, p. 47]. Law derives its legitimacy from elected law makers, the legislators, while elected government, the executive, determine policy and set budgets. Hence, is litigation "really the right way to resolve differences of opinion about what are really questions of policy". According to Sumption "the judicial resolution of policy issues would undermine the single biggest advantage of the political process, which is to accommodate the divergent interests and opinions of citizens" [17, p. 45]. Sumption is not in favour of the law taking over the role of the executive as the law is part of a "larger system of public decision making" namely politics. The mediating role of politics to produce policies which the broadest possible range of people can live with. This is why politics, not law is the more powerful engine of national compromise and effective mediators between the state and the electorate" [17, p. 29]. While law is black and white the concept of representation mediates the variety of clashing opinions in policy making through compromises.

Sumption, in his consideration of the relationship of the United Kingdom courts with the Human Rights Act 1998 (HRA'98) that incorporated the regional human rights treaty the European Convention of Human Rights (ECHR) into the law of the UK, claims that the Convention "ties the United Kingdom to a dynamic system of law whose development is the task of a court standing entirely outside its own political institutions." He concedes that HRA 98 (which only protects CP rights) successfully "protects the interests of vulnerable groups, with no natural body of support among the electorate or the press. It has forced more humane and inclusive values on ministers and officials. It has obliged decision makers to listen to the objections of people whose interests are adversely affected and to provide a coherent and objective justification for their decisions. These are major concessions to the power of human rights law but Sumption's claim that these "concessions were capable of being provided by domestic law without recourse to international treaty" is problematic. It is precisely

<sup>61</sup> [16, p. 47]. This is an interesting question in the UK context since, unlike SA, the UK does not have a constitution that protects positive rights. The human rights act incorporates the ECHR, and the UK is a signatory to the European Social Charter of positive rights. The UK regularly reports to the European Committee of Social Rights on progress made on implementing positive rights.

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because the political system excluded PLHIV a group with no support "among the electorate or press" that PLHIV took their grievances to court in countries where SC rights were constitutionally protected. However, Sumption's larger point is that the law, by overreaching, can either fail to deliver relief or force the issue on behalf of the excluded and become the enemy of democracy.

If the role of the courts is to ensure that governments give effect to their international human rights treaty obligations and constitutional obligations the courts can make careful interventions on issues of equality of access. These are not individual entitlements, but policy matters and the courts can require the government and relevant departments to apply their minds to equitable policies without taking over the role of government. This leaves open the issue of who sets priorities when policy choices are a competition between education, health, housing, clean water and adequate nutrition. Addressing the HIV crisis was a priority as the death rate would have soared. This is where courts have little moral or constitutional unease on the separation of powers issues. States always had a responsibility to prevent infectious diseases and provide primary health care, however, this was difficult to conceptualise as rights or translate into rights language until the UDHR and especially the ICESCR which lists rights and duties of government. It is true that the judiciary cannot be relied upon to enforce health rights as this means taking steps to reduce health inequities, but they do have a role in holding the government accountable, for failing to comply with their constitutional and treaty obligations. This is a limited role of which the courts are quite conscious, as evidenced in a major ruling by the SA court on housing.

The *Grootboom*62 case provided the court with an opportunity to make a determination on the justiciability of SC rights, Yacoob J, held that the constitution included positive rights requiring the state to provide access to housing, healthcare, sufficient food and water, and social security to those in need and unable to support themselves. However, "[T]he obligation does not require the State to do more than its available resources permit."63 Moreover, the insertion of the words "progressive realisation shows that it was contemplated that the right would not be realised immediately." The constitutional qualifications to positive rights restrict the scope of the courts' decisions. However, as the constitution does oblige the state to give effect to these rights it is an obligation that courts in appropriate circumstances can enforce.64

It would appear from an analysis of the HIV case law that rights litigated before court were within the court's capacity to order the state to "respect and protect" but not to "fulfil." Courts are likely to be circumspect in interpreting the right to health in a way that leads to making orders the state can't meet. The role of the courts is significant but limited in advancing the right to health. While current HIV data shows that the situation has dramatically improved with the rollout of ART, and the part the courts played in ensuring access to the drug by upholding the rights of excluded groups, the disease remains a challenge with new infections being reported every year. Global data for malaria, TB and HIV/AIDS showed a clear link between poverty, discrimination, marginalisation and poor access to treatment with direct implications for rates of infection and death. Higher rates of HIV infection are continuing to occur

<sup>62</sup> *Government of the Republic of South Africa and Others v Grootboom and Others,* (CCT11/00)[2000]ZACC 19;2001 (1) SA 46; 2000 (11) BCLR 1169 (4 October 2000).

<sup>63</sup> *Government of the Republic of South Africa and Others v Grootboom and Others,* (CCT11/00)[2000]ZACC 19;2001 (1) SA 46; 2000 (11) BCLR 1169 (4 October 2000) para 45.

<sup>64</sup> *Government of the Republic of South Africa and Others v Grootboom and Others,* (CCT11/00)[2000]ZACC 19;2001 (1) SA 46; 2000 (11) BCLR 1169 (4 October 2000) para 45.

mainly among young women. For health rights to become a reality for PLHIV the focus needed to be on the underlying determinants of health.

#### **5. Implementing health rights: the human rights-based approaches (HRBA) and health inequities**

The progressive realisation of health should be part of the ongoing work of public health authorities as mandated by international human rights treaty obligations. Key to the realisation of health rights is getting to grips with the underlying determinants of health that predispose people to disease and early death pernicious. Poverty, disease, illiteracy, and ignorance can so impair a person's ability to imagine and realise life plans that their lives fail, in important ways, to be realised [23]. Stephen Marks observed that "the essence of the right to health is access to the conditions necessary for the realisation of healthy lives" [11, p. 11] and it is the "duty of the State to ensure those conditions, whether through a regular market or through government services" [11, p. 11]. The denial of, or poor quality education or health care directly affects human agency and human dignity meaning that the enjoyment of CP rights are also impaired if SC rights are not fulfilled [23]. This is what is meant by the indivisibility of rights. Systemic health inequalities is outside the remit of judicial review to remedy. For governments to make progress in the implementation of health rights so that the distribution of health is more equitable in society, the state and society need to shoulder the responsibility.

In his attempt to bring HIV under control, treat PLHIV and protect the health of the whole society, Jonathan Mann developed an approach to public health that was rights-based. The pandemic highlighted the 'social dimension' of the disease that inhibited control and treatment strategies. Mann's plan was to offer a "coherent, comprehensive and practical framework for analysis and action on the societal root causes of vulnerability" to HIV/AIDS [24]. Embedding human rights in the structure and development of public health policy making reorientates public health to focus on the whole society. The conventional approach to dealing with the social determinants of health have significant limitations that a HRBA tries to complement.

The conventional approach to addressing health inequalities is to "focus on universally targeted health interventions designed to benefit as many people as possible" [25]. The public health approach to control the spread of highly contagious and deadly infections is a universal intervention based on achieving the maximum benefit for the greatest number of people. It involves messaging, regulations, statistical analysis, supervision. This approach successfully mobilises the nation, but it fails to have an impact those communities where the infection and death rates are the highest. J. Scott's analysis of the extent of the failure of development programmes of many 20th century schemes concluded that … [P]revious public health research on efforts to control TB, malaria and HIV/AIDs that investigated why some communities failed to take the required action irrespective of the resources deployed, discovered unidentified factors that prevented people from acting on rational information [26]. These may be "social and cultural practices," attitudes and beliefs embedded in communities that "affect 'trust' in government programmes and external messaging" [27] The conventional approach neglected to address these embedded attitudes and beliefs and conspicuously failed to close gaps and disparities in health outcomes within the society with some communities experiencing far worse health outcomes than others. The lack of success was because the programmes lacked "sufficient engagement with

#### *The Global Impact of HIV/AIDS on the Realisation of Health Rights DOI: http://dx.doi.org/10.5772/intechopen.109382*

communities" [27] Closing gaps requires interventions that work better in particular communities than interventions aimed at benefitting the population at large.

A HRBA to health crucially incorporates an understanding of the "individual characteristics of the population groups concerned" [28] It would pinpoint communities most at risk of HIV and identify the politics, religion, traditional practices, social and institutional norms and gender issues that act as barriers to health and prevent public health authorities from controlling and treating HIV/AIDs, not only for the targeted group but for society. The model "treats people not as passive recipients of goods and services but as "participants and key actors in decisions that that affect their wellbeing" [29] HRBA centralises the concept of agency – of individuals (as rights claimants) and of communities – to take decisions for their own health and capacity to make rational health choices. Therefore, a HRBA includes an investigation into barriers to the health of individuals and communities amenable to remedial interventions.

When good quality health services are inaccessible to the most susceptible to disease, health inequalities could be structural or the result of poor policy making. Even access to anti-retroviral treatment, as the HIV case law showed, required overcoming political and economic resistance.65 Gruskin and Tarantola argue that the point of health rights activism, is to hold governments accountable by establishing what amount of government action or inaction contributes to existing violations, "looking at how a government deals or does not deal with identified problems and recommending solutions" [31, p. 449].

HRBA requires an enabling legal and conceptual framework for advancing health rights that is normatively based on international human rights standards [32, 33]. The aim of HRBA is to tackle the effects of human rights breaches on disease prevention and treatment and to ensure that governments fulfill their constitutional and human rights treaty obligations with respect to implementing the right to health [31, p. 449]. The components of HRBA are: (a) the social determinants of health that takes into account the "family, the community, civil society, local and national authorities;" and (b) the legal framework to determine individual, collective, and institutional claims, duties and accountabilities for health.

The main purpose of HRBA is to address inequities. A HRBA demands reasons for high correlations between social inequalities and health outcomes to determine whether perceived health inequalities are health inequities [29]. If an analysis of the underlying determinants of health exposes gaps in the social, political, cultural, historical, and institutional determinants of health, it is crucial to determine if the disparities are "preventable, avoidable or justifiable" [34]. A HRBA offers a "framework for accountability" on inequities in health outcomes by identifying the human rights at issue; determining who owes duties and has obligations at the community and national level; whose health rights needs safeguarding and promotion and whether the inequities are the result of human rights breaches [29]. The United Nations (UN) outlined the pillars of HRBA to development—universality, indivisibility, interdependence and interrelatedness, non-discrimination and equality, participation and inclusion, accountability and the rule of law that need to be "operationalised in the policy, programmes, projects and other health related interventions with a view to enhancing effectiveness" [35] An example of this is the approach of the Indian National AIDS control Organisation (NACO) that was created to control AIDS. Phase three "involved implementing targeted interventions and preventive measures for high-risk populations, and expanding treatment, medical and support services nationwide" [2].

<sup>65</sup> [30]. Quoted in [24].

By 2000, HRBA had already produced some notable successes for PLHIV. The pharmaceutical industry lowered the price of anti-retroviral drugs in low-income countries to less than 10% of their cost [31, p. 451]. They responded to the right of "access to treatment" [31, p. 451]. However, the fact that there were still massive inequalities in the distribution of the drugs with low-income countries suffering the severest shortages showed a lack of international co-operation and resources and that could have benefitted the poorest. Other systematic reviews of HRBA in the context of to HIV/AIDS noted "promising evidence of the impact of human rights programmes on key and vulnerable populations most at risk of HIV" [36] A reduced incidence of HIV could be attributed to a range of HRBA targeted interventions that resulted in "decreased HIV risk behaviours to increased HIV testing to reduced incidence" [36] In a more recent review of 29 studies of HRBA programmes between 2015 and 2019 analysing "influence of context,… conflicting rights and added value" of HRBAs, "… positive changes were reported at individual and programme level" [37] The studies highlight the fact that HRBA targeted the legal, social, political, and economic environments "needed to reach and engage in care, key and vulnerable populations most at risk of HIV infection" [36] The studies measured the outcomes of HRBA initiatives such as the reduction of infections or deaths. Since HRBA centralises participation and agency the implication is that the success of the approach is also a measure of the involvement of people in the understanding and claiming of their rights.

HRBA provides *intrinsic, instrumental, and institutional* rationales for adoption in policies and strategies aimed at the treatment of infectious diseases. The *intrinsic* rationale is that it is the right thing to do, morally and legally and in the interests of justice. Embedding universal human rights values of freedom, equality, and solidarity into policies that affect mainly the poorest prioritises the social determinants of health including cultural norms, traditional practices, and discriminatory practices which might explain the causes of poor health decisions and outcomes. HRBA moves health inequities into the realm of policy and law. The *instrumental rationale* is better and more sustainable health outcomes because HRBA focuses on groups bearing a disproportionate burden of poor health outcomes. It emphasizes and enables participation of the community in bespoke policies addressing the communities' health challenges in the interests of long-term sustainability. The flexible framework addresses many and varied health challenges because the "situation assessment, analysis, design, implementation, monitoring" and evaluation of interventions and policies is informed by international rights.66 The *Institutional rationale* anchors policy development and implementation in a state's international law reporting obligations underscoring the government's responsibility, as primary duty bearers, to ensure that health rights are "respected, protected and fulfilled" including the fair distribution of health rights [29]. A RBA includes accountability mechanisms for duty-bearers to meet their obligations and fulfil their duties leading to better UPR reporting.67 A rights-based approach complements the traditional/conventional approach to public health by building into health strategies and plans key HRBA indicators that ensure health rights are being progressively realised. The value of HRBA is that it builds in "systemizing attention" on core indicators that centralise equity and rights in the larger goal of preventing and treating diseases namely: [1] HRBA:

<sup>66</sup> The Human Rights Based Approach to Programming. Practical Implementation Manual and Training Materials. NY. United Nations Population Fund [38] p. 81.

<sup>67</sup> The Human Rights Based Approach to Programming. Practical Implementation Manual and Training Materials. NY. United Nations Population Fund [38] p. 81.


These elements of HRBA help policy makers ensure that benchmarks and targets are set to guarantee that health rights are realised progressively. It also ensures transparency and accountability for "what decisions are made and their ultimate outcomes" [31, p. 451] HRBA informs the work of International and national NGOs, governments, and individuals by basing the development of strategies and programmes for service delivery on legal standards [31, p. 451]. This helps target new treatments and medical services to the worst hit communities. A health rights framework prevents the neglect of areas of health that could be overlooked and examines the impact of different policies on different communities. It ensures consultation and proper participation making health policies more effective for target populations and puts in place "effective monitoring and accountability arrangements" [16].

#### **6. Conclusions**

The failure of governments to address serious health issues in a timely manner and to narrow inequities in health has increased the demand for the involvement of the law and the courts.

In the end no single intervention curtailed the spread of HIV/AIDs or provided the requisite treatment. Prevention, control and treatment programmes combined with aggressive HIV litigation, brought together biomedical interventions, behavioural changes (such as adherence to condom use, prevention of behaviours associated with an increased risk of infection) in better nationally mandated plans that successfully reduced the incidence of HIV infection and achieved better control of the epidemic [5, p. 2215].

HIV litigation, especially in developing countries, tested the ability of the courts to support the poorest and most susceptible communities in accessing anti-retroviral drugs and holding governments accountable for the health of the population. A combination of legal challenges and well organised activism and advocacy based on breaches of fundamental rights, non-discrimination and states' obligations for health rights achieved a sustainable reduction in HIV incidence.

HIV litigation involved mainly free or affordable access to medication. The litigation tested the states obligations to supply lifesaving medication to the poorest and most afflicted through social security programmes. The cases also tested the regulatory framework of the state to ensure affordability of medication. This meant ensuring that the pricing policy of private pharmaceutical companies did not disproportionality impact the indigent where the preponderance of the HIV cases existed. These cases were a significant intervention in the pandemic and ensured that the tardiness and poor responses from governments that characterised the early phases of the HIV/AIDs outbreak, shifted to a more interventionist approach when it became clear that poverty and inequality were "the primary determinants of the success or failure of attempts at curtailing new HIV infections" [4].

The case law on HIV shows that significant sections of health rights are justiciable since they required immediate implementation and do not have to wait to be "progressively realised." The litigation addressed circumscribed groups of people who were denied access to medication and who would have perished if no relief were granted. Although, some of the court orders were far reaching with the courts being prepared to make orders that involved government spend and extending relief to all poor people with HIV, from the perspective of cost-effectiveness, focussing on populations at highest risk for transmission form HIV/AIDs would have been a better and more effective public health approach to the disease in the first place [5, p. 2215].

However, the review of the case law also showed the limits of the courts in advancing health rights. First, it was easier for courts to rule on health when SC rights were included in the national constitution [39]. Second, the courts can only rule when petitioned which means their interventions are sporadic. This does not constitute systematic monitoring of states' responsibility to implement rights. Third, the courts' rulings were restricted to what became the "core minimum" SC rights of General Comment No. 3. Many of the immediate obligations of states identified in General Comment No. 14 had already been made explicit by the courts in the HIV case law. Hence, the extent to which the law is useful in advancing health rights was also clarified by the case law. The cases did not present the courts with the prospect of "adjudicating complex policies with significant budgetary implications" that would involve the courts in redressing systemic health inequity [14, p. 26]. This is a difficult area to litigate and strengthening litigation or the role of the court to implement SC/health rights may involve an undemocratic expansion of the courts role.

The issues in the HIV case law highlight the original debate between the implementation of the ICCPR and the ICESCR treaties and the argument that that the treaties represent qualitatively different rights. It is more difficult for the courts to

#### *The Global Impact of HIV/AIDS on the Realisation of Health Rights DOI: http://dx.doi.org/10.5772/intechopen.109382*

hold governments accountable for breaches of SC rights. The implementation of SC rights, in this case health rights, remains the primary responsibility of the legislature and executive with the courts holding duty bearers accountable for not taking steps to "progressively realise" all aspects of the rights. While the AIDS epidemic provided the foundation for a revolution in SC rights that upended traditional approaches to human rights enforcement and the proper focus of the courts, it highlighted the fact that health rights can only be partially protected in the courts. To ensure that health related interventions are "responsive, equitable and of good quality" [16] early and routine consideration of the HRBA indicators should be embedded in all government health initiatives dealing with infectious diseases. The monitoring and accountability for health rights ultimately lies NGOs, citizens, researchers, and public health officers. The interest groups are better than courts in monitoring governments for their "action or inaction that contributes to existing violations, looking at how a government deals or does not deal with identified problems, and recommending solutions" [31, p. 451].

Therefore, health rights and the underlying determinants of health have to be the included in policy making, national plans and programmes. According to Paul Hunt, the first UN Special rapporteur on the right to the highest attainable standard of health "…too often, human rights are seen only as standards contained in treaties and declarations. However, human rights have concrete contributions to make in guiding policy formulation and implementation, and constructively addressing major global challenges. A human rights-based approach educates duty bearers about their obligations and how to meet them, and empowers people to claim their rights, which would otherwise remain far away."<sup>68</sup>

<sup>68</sup> Office of the United Nations High Commissioner for Human Rights, Scenario and talking points for High Commissioner on Human Rights event to launch the technical guidance on the application of a human rights based approach to the implementation of policies (September 2012). Available at http:Ilwww.ohchr. org/EN/NewsEvents/Pages/DisplayNews.aspx-?NewsJD=12559&LangJD=;

#### **Author details**

Nirmala Pillay Leeds Law School, Leeds Beckett University, Leeds, United Kingdom

\*Address all correspondence to: n.pillay@leedsbeckett.ac.uk

© 2023 The Author(s). Licensee IntechOpen. This chapter is distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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### *Edited by Samuel Okware*

This book reviews and discusses future opportunities and tools for emerging challenges in HIV/ADS control. Although significant progress has been made in the prevention, control, and care of HIV/AIDS, challenges continue to emerge. Over six sections, the book discusses a myriad of subjects, including obstacles to treatment, risk factors, demographics, testing, comorbidities, mental health, and much more.

> *Alfonso J. Rodriguez-Morales, Infectious Diseases Series Editor*

Published in London, UK © 2023 IntechOpen © Tess\_Trunk / iStock

Future Opportunities and Tools for Emerging Challenges for HIV/AIDS Control

IntechOpen Series

Infectious Diseases, Volume 16

Future Opportunities

and Tools for Emerging

Challenges for HIV/AIDS

Control

*Edited by Samuel Okware*