Discrimination in health care: what is discrimination and what are the effects on the right to health?

By Pierre Brouard

Introduction

In 2018, it’s almost impossible to think of a situation where someone might be denied access to health on the basis of race, certainly on this continent. Even in South Africa, which has a history of racial segregation, a legacy still felt today in an unequal access to health care for all South Africans, there is in law, at least, the commitment to full equality.

But in 1966, discrimination in the United States against African Americans was still common, despite the Civil Rights Act of 1966. Segregated facilities, and inferior care for African Americans, especially in the South, were widespread. At a Chicago press conference on March 25 1966, Martin Luther King called these practices a “conspiracy of inaction” and vowed to “raise the conscience of the nation”. “Of all the forms of inequality, injustice in health is the most shocking and inhuman, ” he said.¹

How sad that these words are as important and relevant today as they were in 1966. Despite on-paper commitments in many countries, the rights of key populations (KPs) to health care remain elusive, a fact that I believe we should still call “shocking and inhuman”. Do they amount to a “conspiracy of inaction”? I will leave you to make up your mind on this, but make no mistake, the health violations that occur across many parts of Africa are unacceptable and require an invigoration of our collective moral conscience.

The right to health

According to the World Health Organisation (WHO) the right to the highest attainable standard of health requires a set of social criteria that is conducive to the health of all people, including the availability of health services, safe working conditions, adequate housing and nutritious foods.²

Achieving this right to health is closely related to that of other human rights, including the right to food, housing, work, education, non-discrimination, access to information, and participation. Furthermore, the right to health includes both freedoms and entitlements: freedoms include the right to control one’s health and body (e.g. sexual and reproductive rights) and to be free from interference (e.g. free from torture and from non-consensual medical treatment and experimentation). And entitlements include the right to a system of health protection that gives everyone an equal opportunity to enjoy the highest attainable level of health.

It is clear that attaining this for all populations across all societies is a mammoth task.

As the WHO notes, vulnerable and marginalised groups in societies are often less likely to enjoy the right to health. Three of the world’s most fatal communicable diseases – malaria, HIV and tuberculosis (TB) – disproportionately affect the world’s poorest populations, and the burden of non-communicable disease – most often perceived as affecting high-income countries – is now increasing disproportionately among lower-income countries and populations.

And people who are particularly vulnerable to HIV infection – including young women, men who have sex with men, and injecting drug users, who fit into the classic definition of KPs – are often characterised by social and economic disadvantage and discrimination. These vulnerable populations may be the subject of laws and policies that further compound this marginalisation and make it harder to access prevention and care services.

Terminology

I say that these groups in society fit into the “classic definition” of what a KP is, but I do believe it is worth unpacking, and even problematising, this term.

Many national AIDS programmes identify a number of KPs deserving of special attention, particularly around HIV prevention. This term replaces what was sometimes referred to as “most-at-risk-populations” (MARPs).

South Africa’s National Strategic Plan (NSP), for example, identifies 14 key populations, including young women, vulnerable youth and children, people who abuse alcohol, sex workers and their clients, as well as groups that have to date not received significant attention, such as people living or working along national roads and highways, men who have sex with men (MSM), and transgender persons.

Each KP listed in South Africa’s NSP is included on the basis of a rationale, such as a greater chance of being exposed to HIV (or a higher recorded prevalence), vulnerability because of social and structural factors, or due to evidence of risky practices or risk associated with physical/bodily factors.

While this sounds like a reasonable way to think of what makes an individual a member of a KP, there is also the risk of stigma and discrimination driven by the idea that KPs may, in some instances, be seen as more likely to transmit HIV. It is a tough balancing act to achieve in prevention work – acknowledging that social and structural factors, such as prejudice and criminalisation, may make a person more vulnerable to acquiring HIV, yet labelled as then more likely to transmit it.

This sentiment surely becomes easily embedded in the social imagination – once there, it is almost impossible to erase, and becomes an unconscious and default assumption about a particular representative of that KP. When that sex worker walks into a health facility, it is almost impossible to think that she or he will get fair, equal and dignified treatment if s/he is seen as a vector of disease.

One way to get around this conundrum has been to include the term “vulnerable” in definitions of KPs.

Vulnerability may be useful in defining a KP because, as suggested, it may not be the inherent qualities of someone from a particular population that makes them more vulnerable, but rather how that population is regarded by others, “for example by their local community, society, at the political level or by the business sector”.³

Hence vulnerability is context-specific and vulnerable populations may enjoy less legal, social or policy protection, which in turn limits their ability to access or use HIV prevention services.

It must be said, though, that even the term “vulnerable” is not without its critics, given that it may position people as passive and as objects of pity, in need of rescuing. Quite often in HIV work, in my view, populations are written and talked about, and indeed researched on, from a deficit point of view, seen as being in positions of inevitable risk – lacking agency, resilience and any social capital. This is a grave error and we do no one a service by adopting this position.

Does the term “key population” need conceptual clarity to make it more useful? Or should it be abandoned altogether? A critical overview of the social science track at the 2014 International AIDS Conference in Melbourne, Australia⁴ argued that the shifts in terminology around KPs often appear to portray progress (dropping stigmatising terms in favour of more politically-correct phrases), but they do little to change the material circumstances of people who routinely face stigma and discrimination and lack of access to basic health care.

Members of KPs commented in different conference sessions that the development of new terminology by international organisations often feels like a distraction from concrete action by donors, researchers and governments, or a way to maintain a misplaced sense of optimism when things are often getting worse.

Some studies also pointed out that projects that consider members of KPs as “whole persons” rather than as vectors of diseases, are often not funded or are under-funded.

Furthermore, the mass of research findings consistently describes considerable diversity within each of these KPs. Yet, the term KP seems to mask this diversity, and also fails to allow for an explicit consideration of intersectionality – namely, the social inequalities (class/poverty, race/ethnicity and gender) that cut across all these populations, rendering some of their members more systematically cut off, vulnerable and at risk than others, and highlighting the need for legal reform and increased realisation of human rights in multiple contexts.

What are the merits of an intersectionalities approach?

Intersectionality is a tool for analysis, advocacy and policy development that addresses multiple discriminations and helps us to understand how different sets of identities impact on access to rights, opportunities and wellness.⁵

Based on the work of Crenshaw, intersectionality is a feminist theory, a methodology for research, and a springboard for a social justice agenda, starting from the premise that people live multiple, layered identities based on their social relationships, history and systems of power that shape their lives and opportunities.

An intersectional analysis is important for HIV because it indicates how prevention, treatment and care need to factor in the multiplicity of people’s lives and that there cannot be a “one-size-fits-all” approach to HIV policy and programming.

Some examples of this emerged in the 2nd African Conference on Key Populations in the HIV Epidemic in December 2015 in Tanzania⁶, where delegates critiqued the use of the term “MSM” because it generalised and was a form of gender stereotyping, and because there are a number of sub-categories of MSM which require different interventions. They also highlighted that there were significant overlaps between KP groups and adolescents within these populations, requiring specific attention, yet this within-group diversity is often underplayed in KP work.

I would go further in being critical of some KP language and texts: talking and writing about KPs in ways which casually link quite disparate groups (like sex workers, drug users and gay men), is problematic. If you are a middle class gay man in a stable relationship, where you are co-parenting a child, why should you be mentioned in the same breath as a sex worker or injecting drug user? I say this not to stigmatise those practices, but to note that they are often more different than they are alike.

How does marginalisation affect KPs?

As a starting point it may be useful to argue that marginalisation highlights challenges around working with sexualities and gender – LGBTI people are in a sense punished for their deviations from what is said to be “normal”. This has the dual consequence of either forcing LGBTI people to be seen as only embodying sexual orientation or gender identity, but at the same time having their sexuality or gender identity written out of national initiatives.

According to AIDS Accountability International⁷ the marginalisation and discrimination that sexually and gender-diverse people experience in most countries around the world are in many ways mirrored in the AIDS response. In many research projects the nuances of sexual orientation and gender identity have been pushed aside or lost under the ambit of gender and/or most at risk populations (MARPs) and combined with people who inject drugs (PWID)s, and sex workers.

Many of these groups are “invisible” to national and global monitoring and evaluation (M&E) efforts, and systematic data is often hard to find. This means that we have little systematic data with which to assess the burden they carry in terms of HIV prevalence or what level of access they have to treatment and other essential services.

MSM represent a partial exception. While some (mostly developed) countries monitor HIV and AIDS among MSM effectively and have the necessary services to be provided at scale, this is not always the case. Nevertheless the political struggle that won these victories for MSM in some countries needs to be broadened to include sexually diverse groups in general in all countries, and indeed to other KPs, where appropriate.

Crucially, beyond the science of epidemiology, and beyond the notion of group or identity, remain diverse ways of showing love and sharing the joys of sex. As these are essential to what it means to be human, they are essential human rights. If sexually diverse populations are invisible also in the discourse on human rights we undermine the very principle of Universal Human Rights, an omission from which all stand to lose.

I have always maintained that what we learn from sexually diverse groups in society is that their diversity, when examined in the cold light of day, is not so unusual, and, that the so-called “heteronorm” is itself a fallacy – heterosexuality is in fact a heterogeneous phenomenon. I repeat here the value of being critical about terminologies so that they do not become conceptual and programmatic traps from which it is difficult to escape.

But we need labels and we need categories to formulate our research questions and to examine the terrain.

Using commonly accepted KP terminology, a rapid assessment of human rights violations in the context of HIV in eastern and southern Africa (ESA)⁸ found that key human rights violations of KPs in the region that heighten the risk of HIV infection and impede access to HIV, health and social care include criminalisation, stigma and violence.

Criminalisation

Criminalisation of KP behaviour not only interferes with the right to privacy, but it also impedes HIV education and prevention work. The right to freedom of expression and information includes the right to seek, receive and impart HIV-related prevention and care information. Educational material which may necessarily involve detailed information about transmission risks and may target groups engaged in illegal behaviour, such as injecting drug use and sexual activity between the same sexes, are wrongfully subject to censorship or obscenity laws or laws making those imparting the information liable for ‘aiding and abetting’ criminal offences.

Criminalisation thus limits the provision of appropriate HIV-related information, education and support, including access to services for sexually transmitted diseases, to the means of prevention (such as condoms and clean injection equipment) and to voluntary and confidential testing with pre- and post-test counselling, in order to enable individuals to protect themselves and others from infection.

The principle of participatory democracy, that is the involvement of KPs in designing and implementing programmes that will be most effective for them, is largely unrealisable for criminalised populations.

Not only do criminalised persons have a justifiable fear that participation in processes may identify them with an illegal behaviour, but they are also often unable to be part of officially registered non-governmental organisations (NGOs) of the kind invited to government consultations. And even if they have organisations, those organisations are unlikely to have the resources and experience needed to participate effectively in HIV planning and decision-making.

Criminalisation also clearly creates conditions for discrimination in health-care settings. Even in a country like South Africa which does not criminalise same-sex conduct, there are significant challenges.

Here is one example.⁹ “I recently interviewed a young gay man [says Alex Muller] who was hospitalised after he fractured both his arms while fleeing a group of men who threatened to beat him up for being gay. The nurse in the emergency ward to which he was admitted abruptly changed her caring attitude towards him when he explained why he was running away from his attackers. She asserted that he deserved the attack, berated him for his ‘un-Christian’ behaviour, and ridiculed him in front of other nurses. He has not attended any health facility since this experience.

In another interview, a young lesbian woman described her attempt to get tested for HIV at a voluntary counselling and testing facility. Upon hearing that she had had sex only with women, the HIV counsellor told her that she did not qualify for an HIV test because she was not at risk, and told her to go home.”

Muller cites another study¹⁰ which reported that all the gay men in their study who visited public clinics in the Soweto area experienced name-calling, ridiculing or other forms of discrimination. Similarly, 60% of transgender respondents in another study had negative experiences in public clinics.

These examples are common across ESA. Sex workers experience systematic abuse when seeking health care and, in some health care settings, former and currently using PWIDs have been denied treatment, including pharmacists refusing to sell needles to drug users, despite selling needles being legal. PWID and MSM are reluctant to attend health centres for fear of being reported to the police where their behaviour is criminalised, despite medical ethics of confidentiality.

Stigma

So of course discrimination is enabled by criminalisation, but stigma is a phenomenon which stands on its own and both informs and is informed by criminalisation. To stigmatise is to be human, and this tendency is socially wired and universal.

What unchecked and pervasive stigma does is to create and sustain conditions leading to societal vulnerability to infection by HIV, including lack of access to an enabling environment that will promote behavioural change and enable people to cope with HIV.

At the national level, stigma and discrimination of key populations limits their inclusion in NSPs. And of course impedes the formation of advocacy, lobby and self-help groups to represent interests and meet the needs of various groups.

Violence

Both criminalisation and stigma, as we have seen, are intimately bound up in each other. What completes the “holy trinity of harm” is the violence and harassment by police and other state and non-state actors aimed at KPs.

This violence, while widespread globally against KPs, is particularly pernicious in contexts where KPs are criminalised. The violence and fear of violence drives KPs underground, where they are more difficult to reach with HIV prevention and health services, and from where they are less likely to voluntarily access services. A range of human rights violations by state actors against sex workers has been documented in ESA, including physical and sexual violence by police in each country and arbitrary arrest, without prosecution. The police also play a central role in harsh and punitive approaches to PWID that substantially affect the risk environment in which PWID operate, exacerbating their HIV vulnerabilities.

The evidence available from eastern and southern Africa includes examples of police detaining friends and family of a person who uses drugs and generalised police harassment. In countries where LGBTI, particularly MSM, are criminalised, there is substantial and widespread documentation of police abuse against those who practice these behaviours. The criminalisation of these groups not only exposes them to greater risks for violence, but also limits their ability to seek redress through legal processes.

Violence directed at sex workers, people who inject drugs and LGBTI people also comes from non-state actors, in particular, community members and intimate partners. Violence by these groups is often linked to assumptions about transgressions of social norms, further highlighting how stigma and discrimination play into direct forms of violence and also how state-approved violence, including the criminalisation of behaviours and population groups, legitimises other forms of violence.

Sex workers are exposed to violence by clients, pimps and intimate partners, while ‘corrective rape’ targets women who identify as lesbian for rape (and murder) by male members of their communities. Blackmail and extortion because of sexual orientation have also been reported in ESA.

Migrants and people in prisons, to name just two other KPs, are not exempt from these challenges.

While describing their circumstances and health challenges in detail are beyond the possibilities of this brief overview, it would be fair to say that legal and social challenges, as well as the unique contexts which migrants and prisoners find themselves in, make interventions exceptionally complex.

It should also be noted that within these KPs are surely many others, such as MSM, trans people and sex workers, who are thus doubly challenged. Sexual violence in prisons, resistance to providing condoms where sex is consensual, and beliefs in the lesser entitlements of prisoners to ART, are particularly worrisome. And of course KPs are highly migrant within and between countries.

What do key populations themselves call for as a way out of this social and structural morass?

Activists at the 2nd African Conference on Key Populations in Dar es Salaam, Tanzania, in December 2015¹¹ called for a range of options.

At the structural level, a change in punitive laws is the most obvious requirement, even though his remains a long-term strategy. In the interim, consideration should be given to building partnerships with community leaders, law enforcement officials, health officials, families and the media, even in the presence of a hostile legal environment, because this can be effective in the short term while legal avenues are being pursued.

Examples were given of Kenya and Nigeria where partnerships with law enforcement through training and sensitisation were more effective than agitation and protest alone. Documentation of rights abuses matters, and is an advocacy tool. One good practice identified was in Ghana, which has established a commission to monitor, report on and mitigate human rights violations relevant to HIV.

Inter-regional and inter-country collaboration on structured and systematic targeted strategies for migrants, supported by the development of common regional frameworks and approaches on migrants, puts this issue into a broader socio-political context, rather than seeing this purely as a humanitarian concern.

Standardised operating procedures and tools to identify KPs, the integration of KPs into ministries’ strategic plans, with KP input, and the allocation of resources and M&E components to these plans is good planning. This should be built on meaningful data sets to inform policy and programming – and here the role of researchers is critical.

Linked to this, at the implementation level, peer-led and community-based approaches for effective intervention are respectful and more likely to work. Holistic services should address their needs and experiences, including violence prevention and mental health issues. A crucial mental health issue identified is support around self-stigma, a critical issue in KP wellness, both physical and emotional. Philosophically, commitment to harm-reduction approaches is essential even if these run foul of popular ideas about “what works”.

At the social level, strategies to address negative attitudes towards KPs by researchers, policy makers, health care providers and the general public will go some way to building a social movement for greater acceptance, especially as lawmakers often assert they must reflect public opinion in developing new laws or establishing case law.

What could be an ethical framework for working with KPs?

Beyond these extremely useful recommendations, Beyrer et al¹² assert that an ethical framework for development agencies may have utility in compromised social and political contexts.

Such an ethical framework for the inclusion of KPs must balance the human rights imperatives of equity and non-discrimination in the provision of public health and care services with the reality of operating in countries with legal systems and social and cultural traditions commonly exclude drug users, sex workers, men who have sex with men and transgender persons from HIV services.

They propose four core principles which may assist programmes with these challenges.

Inclusion

No one should be excluded from HIV prevention, treatment, and care services on the basis of sexual orientation, gender identity, status as a person who sells sex, or based on past or current substance use. Programmes should continue to articulate this principle and expand and sustain a focus on bringing services to “where the virus is.”

Non-discrimination in health care settings and programmes

All persons receiving care have a right to dignity, to confidentiality, and to safety. Programmes can and should insist on respect for the essential human dignity of all persons, and on their right to minimum standards of protection, safety, confidentiality, and fair treatment.

Community engagement

Community engagement is an essential operational principle for KPs and a demonstration of respect for communities that are often marginalised. Genuine partnership with these groups, and with their civil society partners and allies, is essential to every step of the HIV prevention and treatment cascade. Community engagement has been essential to the successful establishment of a methadone clinic for injecting drug users in Dar Es Salaam, Tanzania, and for clinics for MSM in South Africa.7 More recently an opiate substitution programme is ready to begin in my home city of Pretoria.

Pragmatism and the risk environment

As an example, while sex work may remain illegal in many settings, the provision of prevention messages and commodities, including condom promotion and distribution programmes for sex workers and clients, may have significant impact on reducing sexual risks for HIV.

And while injecting drug use is illegal in virtually every country worldwide, there is compelling evidence that the provision of sterile injecting equipment, effective drug treatment, and antiretroviral drugs (ARVs) for IDUs living with HIV can virtually eliminate this form of HIV transmission even if laws against substance use do not change.

These laudable principles expose two key ethical dilemmas: the provision of services, including ARVs, to persons in detention and the provision of services to KPs in settings where their identities, behaviours or practices may be criminalised. The authors argue, in the case of the former, that “If we apply the ethical framework principles we have articulated of inclusion, non-discrimination, and pragmatism, the provision of services to persons in detention becomes clearer.”

In the case of the latter, they contend that “Both non-discrimination and inclusion compel the ethical provision of services to key populations, even where their behaviours or practices are criminalised. The principle of community engagement is critical where discriminatory laws and practices may limit access, increase fear, and impact health seeking behaviours.”

In addition, pragmatism helps to negotiate a balance between seeking ways to provide respectful services while recognising that legal and structural reforms could improve and facilitate services.

“There is abundant evidence to demonstrate that while legal reform can be an important tool in expanding access and quality of HIV services, it is not essential or sufficient to do so. Programmes can focus on provision of services, and governments and security forces on reductions in crime and violence, by engaging with community groups and providers, and focusing on the development and support of enabling environments.”

Furthermore, they argue that for sexual and gender minorities the ethical imperatives of inclusion and non-discrimination can be challenged not only by laws and police practices, but also by cultural and religious sanctions. For MSM and transgender persons, these realities highlight the primacy of community engagement as they best know what is safe, and how public or hidden services need to be. Partnerships can help strengthen their ability to negotiate, legitimise their roles in service provision, and build their capacities.

Conclusions

In conclusion it is worth noting the strong voice emerging from a KP meeting before the ICASA 2015 conference.

Particular mention was made of the arrest, detention, violation and objectification of KP bodies, which are subject to “cruel and degrading treatment”.

I am reminded here of a recent finding of a Kenyan court¹³ which upheld the use of anal examinations to determine a suspect’s sexual orientation, dismissing the argument that the procedure amounts to torture and degrading treatment. Two men had sought a court ruling to stop enforced anal examinations and HIV tests of men accused of being gay, after they were subjected to the procedures. The two were arrested in a bar near Ukunda along Kenya’s coast in February 2015 on suspicion of engaging in gay sex, which is a criminal offense in Kenya. They still face the charges and, if convicted, could face 14 years in jail. “I find no violation of human dignity, right to privacy and right to freedom of the petitioners,” Mombasa High Court Judge Mathew Emukule said.

That KPs survive and remain resilient in these contexts is extraordinary, and the KP activists at this ICASA pre-conference meeting specifically called for acknowledgement of this, and the immense contribution of KP communities and initiatives within the HIV response. This aspect is often overlooked: despite often precarious and hostile circumstances, KP individuals and communities still find meaning and community and negotiate wellness.

These activists further explicitly demanded that healthcare providers abide by the Hippocratic oath by delivering quality, appropriate, non-discriminatory services, that respect confidentiality and the needs and choices of the individual.

Perhaps this is an appropriate way to end this paper, asking whether an individualistic approach is sufficient to tackle the rights of KPs, especially their health rights. Health workers are not isolated from the communities and societies which produce them, they are marinated in a total system which both makes KPs vulnerable and then fails to offer them the health care they need for a dignified life. To focus only on that moment when the KP meets the health system is to miss the bigger picture.

We are all complicit in one way or another in this bigger picture, myself included. Martin Luther King was right when he said that health inequalities are a call to conscience – our collective dignity is impaired when one person is treated badly in a health setting, or a whole group of people is rendered vulnerable through laws, policies and social attitudes which are excluding and harmful.

My wish is that this conference is a call to action to challenge criminalisation, stigma and violence of anyone on grounds which are arbitrary and cruel, and satisfy a destructive and divisive moral impulse.