COVID-19 in LMICs: The Need to Place Stigma Front and Centre to Its Response

Abstract

COVID-19 has caused unprecedented health, economic and societal impacts across the world, including many low- and middle-income countries (LMICs). The pandemic and its fallout have laid bare deep-seated social and economic inequalities with marginalised groups being at greater risk of infection and being disproportionately affected by containment measures and their socioeconomic consequences. Stigma is a central element to such inequalities but remains largely overlooked in the debate on the response to COVID-19, including in LMICs. Yet we know from experiences with other infectious diseases such as HIV/AIDS and Ebola that disease-related stigma is detrimental to halting and controlling pandemics and achieving equitable development. Emerging evidence suggests that stigma associated with COVID-19 is already taking hold. This paper assesses potential driving factors of COVID-19-related stigma, and how this intersects with existing stigma fault lines and explores mechanisms through which COVID-19-related stigma may be counteracted, with a focus on LMICs.

Full text

Vol:.(1234567890)
The European Journal of Development Research (2020) 32:1592–1612
https://doi.org/10.1057/s41287-020-00316-6
SPECIAL ISSUE ARTICLE
COVID‑19 inLMICs: The Need toPlace Stigma Front
andCentre toIts Response
KeetieRoelen1 · CarolineAckley2· PaulBoyce3· NicolasFarina4·
SantiagoRipoll1
Accepted: 7 October 2020 / Published online: 21 October 2020
© European Association of Development Research and Training Institutes (EADI) 2020
Abstract
COVID-19 has caused unprecedented health, economic and societal impacts across
the world, including many low- and middle-income countries (LMICs). The pan-
demic and its fallout have laid bare deep-seated social and economic inequalities
with marginalised groups being at greater risk of infection and being dispropor-
tionately affected by containment measures and their socioeconomic consequences.
Stigma is a central element to such inequalities but remains largely overlooked in
the debate on the response to COVID-19, including in LMICs. Yet we know from
experiences with other infectious diseases such as HIV/AIDS and Ebola that dis-
ease-related stigma is detrimental to halting and controlling pandemics and achiev-
ing equitable development. Emerging evidence suggests that stigma associated with
COVID-19 is already taking hold. This paper assesses potential driving factors of
COVID-19-related stigma, and how this intersects with existing stigma fault lines
and explores mechanisms through which COVID-19-related stigma may be counter-
acted, with a focus on LMICs.
Keywords Stigma· COVID-19· Coronavirus· Pandemic· Disease-related stigma·
Development· LMICs
Résumé
La COVID-19 a eu un impact sanitaire, économique et sociétal sans précédent à
travers le monde, y compris dans de nombreux pays à revenu faible ou intermédiaire
(PRFI). La pandémie et ses retombées ont mis à nu de profondes inégalités sociales
et économiques, les groupes marginalisés étant plus exposés au risque d’infection et
étant touchés de façon disproportionnée par les mesures de confinement et par leurs
conséquences socioéconomiques. La stigmatisation est au centre de ces inégalités
mais reste largement négligée dans les débats sur la réponse à la COVID-19, y com-
pris dans les PRFI. Grâce à l’expérience que nous avons sur d’autres maladies infec-
* Keetie Roelen
k.roelen@ids.ac.uk
Extended author information available on the last page of the article

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COVID-19 inLMICs: The Need toPlace Stigma Front andCentre…
tieuses telles que le VIH/SIDA et la maladie à virus Ebola, nous savons pourtant que
la stigmatisation liée à une maladie empêche de contrôler et de stopper les pandémies
et ne permet pas un développement équitable. De nouvelles preuves suggèrent que
la stigmatisation associée à la COVID-19 gagne déjà du terrain. Cet article évalue
les facteurs potentiels de stigmatisation liée à la COVID-19, analyse comment cela
se recoupe avec les failles existantes de la stigmatisation et explore les mécanismes
par lesquels on peut lutter contre la stigmatisation liée à la COVID-19, en mettant
l’accent sur les PRFI.
Introduction
Since its onset, experiences with COVID-19 in China, Europe and the United States
provide clear testimony of its far-reaching health, economic and societal impacts.
It is becoming increasingly clear that the pandemic’s consequences are likely to be
even graver in many low- and middle-income countries (LMICs). Higher transmis-
sibility due to overcrowding in densely populated areas, larger household sizes and
poor quality of water and sanitation, higher infection-to-case ratios due to high prev-
alence of comorbidities such as hypertension and diabetes, and higher fatality rates
due to lack of health care capacity contribute to more severe health consequences in
LMICs (Dahab etal. 2020). Lockdown measures and restrictions on movement that
have been put in place to quell infection rates also have far-reaching adverse effects.
Large proportions of the workforce in the informal labour market are left without
any source of income and informal supply chains are disrupted (Kelley etal. 2020).
Negative health and economic consequences are exacerbated by limited coverage
of social protection (Lind etal. 2020). Lack of income support makes it more diffi-
cult to adhere to physical distancing by foregoing work outside the home. Estimates
suggest that the number of people expected to fall into extreme poverty ranges any-
where between 80 and 395 million (Sumner etal. 2020).
To date (in September 2020), policy measures have focused on providing short-
term economic relief for those most vulnerable (Gentilini etal. 2020) and on devel-
oping a vaccine that is available and affordable for all (Usher 2020). However, as
experiences with HIV/AIDS, Ebola, cholera and other transmissible diseases have
highlighted, responses to pandemics often suffer from a narrow biomedical focus
and overlook the social, economic, political and cultural contexts in which they take
place (Kelley etal. 2020). This limits understandings of how disease might spread,
who is affected and how, and how policies should be shaped to offer the most effec-
tive and equitable response. This is no different for COVID-19: the sheer scale of
the pandemic, the speed at which it continues to spread and the urgency with which
response measures are being put in place means that socioeconomic dynamics and
inequities receive relatively little attention (Kelley etal. 2020). Moreover, LMICs’
replication of policies that originate from high-income countries call into question
the extent to which such policies are adequately contextualised and pay attention
to existing patterns of socioeconomic injustice (Barnett-Howell and Mobarak 2020;
SSHAP 2020).

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Stigma is integral to patterns of injustice, and experiences with other pandem-
ics highlight that paying heed to stigma is vital for providing an effective and
equitable response to COVID-19. Long-standing research on HIV (Mahajan etal.
2008; Castro and Farmer 2005) and neglected tropical diseases (NTDs) (Hofstraat
and van Brakel 2016) as well as more recent experiences with Ebola (Karamou-
zian and Hategekimana 2014) indicate that stigma is experienced by those being
affected by disease (both directly or indirectly, such as survivors or health workers)
or by groups that may be seen as ‘vehicles’ for, or most structurally vulnerable to,
infection. Stigma also intensifies along fault lines such as class, age, gender and race
(Lerman etal. 2017). Stigma is detrimental to halting and controlling pandemics, to
support societies’ recovery from a pandemic, and achieving equitable development.
It puts up barriers to accessing health care and social services, impedes health-
seeking behaviour, undermines adherence to treatment and leads to social exclu-
sion, discrimination, mental distress and—in some cases—violence (Rohrwerder
2018; Stangl etal. 2019; Roelen 2020). Although COVID-19 is still relatively new,
the many unknowns and uncertainties associated with this ‘newness’ may give rise
to fear that can in turn fuel stereotyping and stigmatisation (WHO 2020). Indeed,
stigmatisation of those infected with or having survived the virus as well as health
workers who face high exposure is already mounting (Bagcchi 2020; United Nations
2020a; Taylor 2020).
The objective of this paper is twofold. First, we assess potential driving factors of
COVID-19-related stigma, and how this intersects with existing stigma fault lines.
Second, we explore mechanisms through which COVID-19-related stigma may be
counteracted and prevented. We do so by taking an interdisciplinary approach and
building on well-established research on disease-related stigma in relation to pan-
demics such as HIV, NTDs and Ebola as well as literature on stigma associated with
old age, disability and poverty.
The remainder of this article is structured as follows: First, we provide a concep-
tual framework to underpin our analysis of COVID-19-related stigma. Second, we
assess driving factors that contribute to COVID-19-related stigma. Third, we explore
fault lines that intersect with and compound COVID-19-related stigma. Fourth, we
explore ways in which such stigma may be avoided in the response to COVID-19.
Finally, we offer critical reflections for future action.
Framing Stigma
In his seminal work on stigma, Goffman (1963) posits that stigma denotes an attrib-
ute that is discreditable, leading to a ‘spoiled identity’. Stigma represents a char-
acteristic that is different from ‘normal’ and triggers disapproval or devaluation in
certain social contexts (Bos et al. 2013; Link and Phelan 2001) with those being
stigmatised somehow deemed to be less human (Goffman 1963). Stigmatisation
constitutes others’ responses to stigma and can be overt, such as avoidance and
humiliation, as well as more subtle, including lack of eye contact (Bos etal. 2013).
This, in turn, interacts with ‘potential internalization of the negative beliefs and
feelings associated with the stigmatised condition’ (Bos etal. 2013), understood as

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self-stigma, internalised stigma or shame. One can also distinguish between ‘exis-
tential’ and ‘achieved’ stigma (Falk 2001). Existential stigma derives from a condi-
tion that is mostly outside of the control of the target of the stigma, while achieved
stigma applies to those ‘who have earned a stigma because of their conduct and/or
because they contributed heavily to attaining that stigma’ (11).
Stigma has far-reaching intrapersonal, interpersonal and societal consequences,
ultimately undermining efforts to counteract pandemics and promote equitable
development. It leads to social isolation, hampers access to care, and reduces treat-
ment adherence (Mulea etal. 2009). During the Ebola pandemic in western Africa
from 2014 to 2016, Ebola patients, survivors and orphans (and on occasion their
relatives), as well as health workers involved in the response faced “shunning and
isolation, ill-treatment, [and] the rejection of treatment and political or economic
exclusion” (ERAP 2014, p. 1). Fear of stigma led Ebola-affected families to hide
symptoms from their communities and health services (Hewlett and Hewlett 2008).
Similar reports emerged from survivors and health workers as a result of the SARS
pandemic in some Asian countries (Lee etal. 2005; Verma etal. 2004). There is also
published evidence of widespread stigma related to NTDs such as lymphatic filaria-
sis, podoconiosis, Buruli ulcer, onchocerciasis, leprosy, and leishmaniasis (Hofstraat
and Brakel 2016, p. 65).
These examples of disease-related stigma can be linked to Goffman’s notion of
‘spoiled identity’. A common critique of Goffman’s theory, however, is that it pro-
vides an apolitical understanding of stigma, placing the onus of being ‘discredited’
on those that are stigmatised. Instead, as pointed out by scholars across the health
and social sciences, stigma takes hold and is perpetuated within a social context
with inherent power structures, serving to put in place and maintain hierarchies and
social order (Link and Phelan 2001; Tyler and Slater 2018; Parker and Aggleton
2003). Building on conceptualisation of stigma within the field of HIV (Earnshaw
etal. 2013), COVID-19-related stigma can be understood as a social phenomenon
whereby people infected with or affected by COVID-19 are labelled, stereotyped or
discriminated against and that intersects with existing fault lines of socioeconomic
disadvantage, thereby perpetuating and reinforcing power structures and structural
inequalities. Stigma is the visible ‘tip of the iceberg’ of much wider systems of
beliefs about who carries disease and why that are grounded in and compounding
social inequalities (Castro and Farmer 2005).
The Health Stigma and Discrimination Framework by Stangl etal. (2019) helps
to ground understandings of stigma within a wider context and to map the process
from drivers and facilitators of stigma through to outcomes of stigma. Drivers of
stigma tend to be specific to the health condition, including fear of infection, lack of
awareness, stereotypes and prejudice. Facilitators of stigma apply more broadly and
include social and cultural norms, levels of inequality and legal and policy environ-
ments. The health-related stigma itself intersects with other stigma ‘markers’ such as
age, gender, race and class. This then leads to experiences, manifestations and out-
comes at individual, societal and institutional levels, ranging from internalisation of
stigma to social exclusion and institutionalised discrimination (Stangl etal. 2019).
The framework’s multi-layered focus and the way in which it locates the pro-
cess of stigmatisation within the wider socioeconomic context makes it particularly

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useful for coming to grips with the unfolding and evolving nature of COVID-19-re-
lated stigma in LMICs. It affords an opportunity to move away from biomedical
explanations of how the pandemic may evolve and provides a biosocial perspective.
Experiences in relation to HIV and AIDS have evidenced the importance of under-
standing social, economic and political processes surrounding disease in order to
create an effective response (Castro and Farmer 2005). Given the evolving nature of
the pandemic and its drivers, dynamics and manifestations, we zoom in on emergent
driving factors of COVID-19-related stigma and fault lines along which existent
stigma may be reproduced and compounded.
Driving Factors ofCOVID‑19‑Related Stigma
Based on a review of stigma in relation to other transmissible diseases, attributes
such as old age, disability and poverty and unfolding knowledge about COVID-
19-related stigma, we identify three interrelated driving factors.
Lack ofInformation andMisconceptions
First, lack of information, misinformation and misconceptions serve as key conduits
for stigma, often assigning blame for disease. Whilst biomedical explanations may
be widely available, alternative explanations or misinformation may emerge with
specific individuals being singled out as causes or carriers of disease, playing into
‘achieved’ stigma. For example, during previous Ebola outbreaks in the Democratic
Republic of Congo (DRC), the disease had been attributed to witchcraft or sorcery,
supposedly enacted by those who were perceived to ‘benefit’ from a patient’s death,
widows or mothers of the diseased, or people who are seen as outcast and in contact
with non-natural forces (Ripoll etal. 2018). In Pakistan, the general public incor-
rectly identified dementia symptoms as a normal part of aging, or perhaps more
concerning, that it is attributable to the actions of the individual. The latter inevi-
tably led to people believing that the person with dementia should be responsible
for their own healthcare and outcomes (Boyce and Cataldo 2019). Similar dynam-
ics have been observed in relation to disability with cultural and religious beliefs
playing into false perceptions about causes of disability (Rohrwerder 2018). Across
Africa, stigma-inducing beliefs include disability being caused by ancestral curses
or transgressions in previous generations, demonic possession and supernatural or
otherworldly interference, promiscuity or other sinful behaviour by the mother or
other family member or a punishment for wrongdoing by the person with a disability
(ibid). Stigma may also arise from beliefs that people with a certain condition pose a
burden to society. These experiences are clearly visible in relation to disability with
low (and often misplaced) expectations about how people with disabilities can or
cannot contribute to society leaving them labelled as less able or productive (Rohr-
werder 2018). They also play out in relation to poverty, with people in poverty being
blamed for their predicament on presumptions of laziness or unwillingness to work
(O’Hara 2020).

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COVID-19 inLMICs: The Need toPlace Stigma Front andCentre…
Misinformation and misconceptions in relation to COVID-19 are already wide-
spread. For example, in Ghana there was a voice recording where it was believed
President Nana Akufo-Addo was endorsing numerous false conspiracies, including
the claim that the pandemic was a planned event. Ghana’s Information Minister has
confirmed the voice on the recording is not that of the president (BBC News 2020).
In Nigeria and Sudan politicians, have been seen wearing ‘protective badges’ that
are marketed as ‘virus blockers’ or ‘virus stoppers’. It is claimed the badges kill
viruses and bacteria by releasing a type of bleaching agent, but experts report that
such ‘blockers’ do not work and could actually cause harm (ibid).
There are still many unknowns about the virus (WHO 2020), offering fertile
feeding ground for misconceptions and alternative explanations. Internet and social
media are widely used to obtain information about COVID-19 but often information
is of low quality (Cuan-Baltazar etal. 2020). The WHO has referred to an ‘info-
demic’ to denote the excessive volume of information that is available (Barua etal.
2020), much of which is incorrect (Erku etal. 2020). There is some suggestion that
the spread of misinformation may be larger in LMICs (Wajahat Hussain 2020), pos-
sibly due to greater reliance on social media for information and lower capacity for
fact-checking. Misinformation about COVID-19, including about its origin, spread
and treatment, is widespread across Africa, hampering an effective response and
risking demonisation of those infected (Ahinkorah etal. 2020). BBC News Africa
has launched a COVID-19 misinformation hub, offering a service that fact-checks
and debunks false information about the pandemic (BBC News Africa 2020).
Fear ofContagion
Second, fear of contagion is a significant driver of prejudice, stereotyping and
stigmatising behaviour. This has been widely observed as in relation to disability
(Rohrwerder 2018) and NTDs (Hofstraat and van Brakel 2016). Widespread anxiety
about the cause and spread of SARS constituted an important mechanism for stigma
to take hold at the time of the outbreak in Asia in the early 2000s (Person etal.
2004). In China, fear of contracting HIV was an important source of stigmatising
attitudes associated with HIV and AIDS among rural–urban migrants (Hong et al.
2008). This also relates to ‘existential’ and ‘achieved stigma’; disease-related stigma
is often related to the extent to which the person being stigmatized is deemed at fault
for having contracted the illness if their behaviour contributed to infection. Such
‘victim-blaming’ has been widely observed in relation to HIV and AIDS, including
in the Caribbean (Castro and Farmer 2005).
The infectious nature of COVID-19 and its potentially life-threatening consequences
coupled with ubiquitous updates about infection and fatality rates leads to high levels of
anxiety, stoking fear of infection (Basu 2020). Already examples are emerging of how
such fear leads to prejudice, avoidance and demonisation among those having been
infected with or having survived COVID-19. In Ecuador, the family of the first person
having contracted the virus fell victim to a harsh social media campaign, accusing them
of irresponsible behaviour (Armario 2020). In Indonesia, names of the first few cases
were leaked online, with one woman being falsely blamed for having contracted the

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virus due to selling sex to a foreign client (ibid). In Kenya and Zimbabwe, survivors
of COVID-19 were shunned by their communities after having returned from hospital
for fear of them infecting others (Soi 2020; Bagcchi 2020). In Bangladesh and India,
social shunning of those (suspected of) being infected with COVID-19 reportedly led
to suicide (Mamun and Griffiths 2020). Healthcare workers around the world, includ-
ing in LMICs, also face harassment and stigmatisation, largely out of fear for infection
(Sotgiu and Dobler 2020; Taylor 2020). In Mexico, doctors and nurses reportedly used
bicycles to travel to and from work as they were denied access to public transport; in
India, healthcare workers have been asked to vacate their rental homes and face social
isolation (Bagcchi 2020).
Targeted Policies
Third, policies that single out and separate vulnerable groups and the narratives that
underpin them often inadvertently act as conduits for stigma. Such policies are the
most visible way of labelling those who are ‘deviant’ and distinguishing them from the
rest of society who are deemed ‘normal’, laying the foundation for legitimisation and
institutionalisation of stigma (Falk 2001). The cholera response in Brazil, for example,
unwittingly ‘earmarked’ specific communities or persons as foci of disease transmis-
sion through their targeting, treatment and risk communications strategy (Nations and
Monte 1996). In relation to disability, there is a long history of segregating people with
disabilities from the rest of society by placing them in institutions, leading to perpetua-
tion of negative stereotypes (Rohrwerder 2018). With respect to old age, there are stere-
otypes that older adults are weak and need help (Coudin and Alexopoulos 2010), feed-
ing into a notion that elderly persons represent a burden to society. Support to people
in poverty is commonly targeted on premises of ‘deservingness’(Van Oorschot 2002),
leading to a toxic narrative about who should get what and why (or why not) (O’Hara
2020).
Many policies that seek to contain the spread of COVID-19 rely strongly on prac-
tices of singling out, separating and labelling, thereby laying the foundation for stigma.
Quarantine, a measure that has also been used in Ebola and SARS outbreaks, is likely
to feed COVID-19-related stigma (Brooks etal. 2020). In India, air crew staff felt stig-
matised after health authorities stamped ‘quarantined’ on their houses (Krishnatray
2020). Gender-based physical distancing measures may also bring to the light people’s
sexual orientation or non-conforming gender identities, putting them at risk of harass-
ment and prejudice. In Colombia, measures to limit the number of people on the streets
allowed men and women to go outdoors for essential tasks on alternate days, leaving
trans people at risk. Multiple reports of abuse and violence against trans people were
reported (Griffin and Antara Rivera 2020).

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COVID-19 inLMICs: The Need toPlace Stigma Front andCentre…
Fault Lines forCOVID‑19‑Related Stigma
Disease-related stigma does not stand on its own and interacts with other fault
lines, layering onto already existing processes of discrimination and marginali-
sation and leading to intersecting or co-stigmas. For example, when cholera re-
emerged in Latin America in the 1990s, the disease was attributed to poor people,
who had been previously neglected and marginalised by the state in terms of pro-
vision of basic water and sanitation infrastructure and health services. Cholera
was also racialised, and poor black and indigenous people were ‘othered’ as dirty
or filthy (Briggs and Mantini-Briggs 2003; Nations and Monte 1996). Those liv-
ing in informal settlements were unable to implement the government guidelines
on cholera, because of inadequate infrastructure (e.g. water points and soap) (Rip-
oll 2017). In China, HIV/AIDS-related stigma was found to co-exist and interact
with commonly associated stigma attached to injection drug use and commercial
sex (Chan etal. 2007).
Across LMICs, we can also see such fault lines emerging that make certain
groups more vulnerable to COVID-19-related stigma. We identify four main fault
lines.
Poverty andInformality
First, people living in poverty, precarious conditions or informal settlements
are at a heightened risk of COVID-19-related stigma. Poverty and deprivation
itself is a potent trigger for stigma, leading to internalisation of stigma and shame
(Walker 2014). This in combination with the many difficulties that people in pov-
erty and precarious conditions face in adhering to distancing measures provides
a potent mix for stigma. Guidelines on hand hygiene, physical distancing or lock-
down are often not plausible in densely populated, informal and impoverished
contexts due to crowding, insufficient water and sanitation services and low and
precarious incomes (Wilkinson 2020). Similarly, farm workers, refugees and peo-
ple living on the street are both less able to adhere to lockdown and physical
distancing measures while also more affected by those measures (Devereux etal.
2020). This makes them vulnerable to negative stereotyping and being labelled as
vehicles of infection, which compounds stigma that pre-dates COVID-19 (Logie
and Turan 2020).
Ethnicity, Origin andNationality
Second, ethnicity and nationality represent important fault lines for COVID-
19-related stigma. Blaming a ‘foreign other’ for the outbreak of disease is com-
monplace in order to make sense of and distance oneself from disease (Logie
and Turan 2020). For example, during the 2018 Ebola outbreak in DRC, the Twa
indigenous group was singled out by the majority Bantu community as trans-
mitters of the disease, and experienced discrimination in their access to health

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services (Duda etal. 2018). Stigmatisation of Asians, or anyone deemed of Asian
origin, was widespread in North America and Europe in relation to SARS and
Avian Flu (Lynteris 2019; Rafi 2020; Person etal. 2004).
Similar co-stigma is likely to occur in relation to COVID-19. The fact that the
virus first emerged in China has given rise to or compounded pre-existing nega-
tive attitudes, discrimination and xenophobia directed at Chinese people or those
who are perceived to be of Asian descent in many high-income countries, such as
Canada (NCCDH 2020). Few reports of Sinophobia in relation to COVID-19 have
emerged from across LMICs, although experiences involving Chinese nationals in
Uganda indicate that mistrust based on assumed nationality and origin is on the rise
(Oryem 2020). Instead, a more disparate group of people ‘on the move’ have been
stigmatised for spreading the virus. Depending on who and where these groups are,
this may be associated with ethnicity, nationality or place of origin (United Nations
2020a). In Mozambique, for example, mine workers who migrated back home from
South Africa were met with suspicion when integrating back into their communi-
ties (UN Department of Global Communications 2020). Finally, with a growing evi-
dence base now indicating that Black, Asian and Hispanic patients are at a higher
risk of contracting COVID-19 (Pan et al. 2020), ethnic minority is further com-
pounded as a co-stigma.
Age
Third, age—and old age in particular—is likely to emerge as a fault line for COVID-
19-related stigma. Deaths associated with COVID-19, disproportionately occur in
older adults (Jordan etal. 2020; Zhou etal. 2020). This can be attributed to older
adults having increased likelihood of underlying health conditions such as diabetes
and cardiovascular disease (Suastika etal. 2012), hypertension (Buford 2016), and
respiratory problems (Buist etal. 2007), all of which increase the risk of COVID-
19-related deaths (Wu and McGoogan 2020; Zhou etal. 2020). In addition, ageing
results in a general decline in immune responses (Weiskopf etal. 2009), making
older adults more vulnerable to such viruses. As such, it is unsurprising that many
health policies are put in place to protect this group.
However, this focus on old age as a factor of vulnerability is likely to compound
existing patterns of ageism. In Kenya, ageism has led to the marginalisation, loss
of power and dignity of older adults, opening the way to elder abuse (Kabole etal.
2013). Within LMICs more broadly, older adults describe that they are being denied
autonomy related to finances, work, family life and their everyday activities (Hel-
pAge International 2018). Governments may not have the healthcare and support
systems in place to support older adults, further restricting older adults’ choices.
This in itself may reflect structural discrimination, as age limits imposed by global
health policy and targets may lead to governments not allocating health resources to
older adults (Lloyd-Sherlock etal. 2016).
Current literature from HICs indicate that a significant minority of public dis-
course about older adults and COVID-19 express ideas that older people are less
valuable or that they should just be isolated (Xiang etal. 2020). Such narratives,

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COVID-19 inLMICs: The Need toPlace Stigma Front andCentre…
particularly when perpetuated by those in power, could lead to policy that isolates
older adults and discriminates against their basic human rights (Ayalon 2020). Lack
of health care capacity to provide care for all patients and has led to debates about
who should be prioritised for treatment, often finding younger people more ‘deserv-
ing’ (Logie and Turan 2020) Whilst ageist issues exist in LMICs, such as in Ghana
(Gyasi 2020) and Kenya (Kabole etal. 2013), there is a dearth of data derived from
these regions. Cultural differences and government responses to the pandemic are
likely to drive how COVID-related stigma may (or not) form in relation to age.
For example, within China a key theme from social media discourse was that older
adults were still seen as “contributing to the community”, with views of warmth and
competence during the pandemic (Xi etal. 2020).
Gender andSexualities
Fourth, gender and sexualities are emerging as important fault lines for COVID-
19-related stigma. In many countries, LGBTI people have previously been blamed
for disasters or disease. In Bhutan, for example, transgender women were held
responsible for natural disasters (Chuki 2019). In Zimbabwe, LGBTI people affected
by HIV and AIDS were blamed for their illness and for placing a curse on their fam-
ily (Hunt etal. 2017).
Reports are already emerging of such blaming taking place in relation to COVID-
19, such as in Israel where one Rabbi propagated coronavirus as the revenge to gay
parades and in Iran where a Shia cleric warned that the pandemic would not sub-
side as long as same-sex marriages were legal in Iran (United Nations 2020b). The
United Nations has also highlighted that surveillance and control of populations in
order to contain the virus can galvanise oppression of sexual and gender minority
peoples (United Nations 2020a), often in settings where transphobic and homopho-
bic actions are already prevalent. In Uganda, for example, police reportedly used
laws that prohibited more than 10 people gathering in public to arrest 23 people
living in a sheltered housing project for LGBTI people (United Nations 2020b). A
study among young people in Asia and the Pacific found that those who identified as
LGBTI individuals or members of the transgender community were more likely to
experience stigma during the pandemic (UNAIDS 2020).
Countering Stigma
There is a wide and well-established body of literature that assesses the role and
effectiveness of interventions to counter disease-related stigma. These interventions
engage at the intrapersonal level—seeking to counter internalised stigma—as well
as at interpersonal and community level. With respect to NTDs, these commonly
include self-care and self-help (Pryce et al. 2018), educational programmes (Cor-
reia etal. 2019), assistive technology (Maia etal. 2016), and community engage-
ment approaches (Jung etal. 2020). Other measures against stigmatisation tend to be
health education for patients and the community (Zeldenryk etal. 2011) and disease

1602
K.Roelen et al.
management, yet the effectiveness of these measures has not been demonstrated in
the literature (Hofstraat and van Brakel 2016). Additional measures include rehabili-
tation, counselling and support groups (ibid).
Most of these measures can be considered reactive, aiming to counteract or
reduce already existing patterns of stigma. Moreover, they are predominantly prem-
ised on a biomedical approach and are therefore highly individualistic, aiming for
empowerment on a top-down basis that is largely disconnected from the struc-
tures that facilitate and legitimise stigma in the first place (Scambler 2009). With
COVID-19 still evolving and its longer-term responses beginning to take shape, a
more proactive and strategic approach to avoid stigma taking hold at a large scale
may be more equitable and effective. Adverse unintended social consequences are to
be avoided (Hargreaves etal. 2020) rather than to be grappled with once they have
taken hold. Crucially, any policy response needs to acknowledge and address the
human rights violations that caused COVID-19 to flourish in the first place, and new
violations that have resulted from the disease that allow stigma to reproduce itself
and new stigmas to emerge. Without addressing the root causes of violations, the
next disease or the next pandemic will repeat the stigma cycle where certain viola-
tions cause disease and new violations are created due to disease.
Experiences in relation to other disease-related stigma, including NTDs and HIV,
points to the importance of a rights-based and inclusive response. Public health
programmes that take a rights-based approach have been shown to ‘improve ser-
vice delivery and enhance equality, equity, inclusiveness, and accountability’ (Sun
and Amon 2018). The WHO has set out a rights-based approach to NTDs, and that
could apply to COVID-19 and other transmissible diseases, which emphasises the
principles of participation, non-discrimination, and accountability (WHO 2009).
This resonates with a recently published report by the United Nations that places
human rights at the centre of the response to COVID-19 and recommends, among
others, that policies should guarantee meaningful participation of all sectors of soci-
ety, that efforts need to reach those most vulnerable and traditionally marginalised,
that political leaders and other actors should speak out against discrimination and
that freedom of expression is guaranteed in order to hold governments to account
(United Nations 2020a). We discuss key considerations for a rights-based and inclu-
sive approach to avoiding and mitigating COVID-19-related stigma within the con-
text of LMICs.
Participation andInclusion
Participation and engagement of those affected by COVID-19 will be vital for ensur-
ing that responses are contextualised, localised and responsive to needs (Logie and
Turan 2020). In order to avoid that social and economic inequalities are overlooked
or compounded, participation needs to cut across intersecting stigmas and fault
lines (ibid) such as poverty, ethnicity and age (Hargreaves et al. 2020). Depend-
ing on the disease and the context, working with communities and those affected
by disease will allow for tailored and community-led responses. For example, the
Twa in DRC were incorporated into the response to deliver their own services, and

1603
COVID-19 inLMICs: The Need toPlace Stigma Front andCentre…
communication materials were prepared in the local language (Duda etal. 2018). In
Liberia, the inclusion of Ebola survivors is recommended for developing interven-
tions for Ebola-related stigma (Overholt etal. 2018).
In addition, states have an obligation to ensure that laws, policies, and the dis-
tribution and delivery of resources, health services, and underlying determinants
of health adhere to the principles of equality and non-discrimination. For example,
in Sierra Leone, one of the initiatives promoted by the Ebola Response Anthropol-
ogy Platform was a step-by-step reintegration process in which a social contract
was signed by the community and the survivor, including the negative results of the
tests, the commitment to pursue infection control practices, and the willingness to
welcome the individual (ERAP 2014).
Inclusion should not be taken at face value. Experiences with the response to HIV
are instructive in this respect. Inclusive actions, and their associated forms of knowl-
edge about HIV, have themselves often been subject to stigma (Parker and Aggleton
2003). Indeed, still today gender and sexual minority peoples continue to be failed
by the international HIV and AIDS response, even as it bears the imprint of sexu-
alities activism. Inclusion may look like it is happening when ‘LGBT recognition’
is inserted into policy documents and programme guidelines, but substantive and
on-the-ground action is called for, based in the lived realities of people of diverse
gender and sexuality (Farina etal. 2019).
Inclusion may also be at odds with preventing stigma. Focusing efforts on the
inclusion of vulnerable and traditionally marginalised groups requires identifi-
cation and targeting of such groups. Targeted service delivery inevitably requires
labelling and separating out, which in itself is a source of stigmatisation. Service
provision premised on the principle of universalism may be powerful in preventing
stigma (Roelen 2020). In the case of cholera in Brazil, for example, affected poor
communities felt less stigmatised when the target of hygiene promotion activities
and communication was universal (rather than specific to the poor communities),
and when treatment was given as part of broader services for diarrheal disease or
broader health system reinforcement, rather than stigmatising cholera treatment cen-
tres (Nations and Monte 1996). At the same time it should be noted that ‘shared
stigma’ can also galvanise positive action within affected groups (Van Laar etal.
2013), helping them to generate solidarity and reclaim identity (Logie and Turan
2020).
The very nature of COVID-19 also poses challenges to a truly inclusive
approach. With many of the containment measures focused on physical dis-
tancing, the potential for groups to have contact and learn from each other is
inevitably hampered. This poses a real conundrum in terms of trying to avoid
stigma (Logie and Turan 2020). In line with experiences with SARS, balancing
the protection of public health while preventing stigmatisation of groups that
are greater risk of contracting or spreading the disease during a rapidly evolv-
ing pandemic like COVID-19 is fraught with complexities (Person etal. 2004).
Experiences with Ebola in Liberia suggest that minimising social isolation, rein-
tegration in recognition of the end of transmission risk and community-wide eco-
nomic support serve as pre-emptive approaches for mitigating long-term stigma
(Overholt etal. 2018). Indeed, there is evidence that contact is far more effective

1604
K.Roelen et al.
than education in approaches to engage stigmatizers in efforts to reduce disease-
related stigma. In addition, meaningful contact has been seen as a key pathway
to reduce ageism (Christian etal. 2014) and stigma towards those with mental
illness (Corrigan et al. 2012). However, the potential viral spread of promoting
contact between groups, particularly those that are the most vulnerable, calls for
caution. Video contact may serve as an alternative, assuming that the infrastruc-
ture is in place, though this may be less effective than face-to-face contact (Corri-
gan etal. 2012). In addition, contact needs to be ‘voluntary, equal, intensive and/
or rewarding, prolonged, or where a number of people are involved’ (Pescosolido
etal. 2008). If the overall impact of social interactions is ‘troubling, harmful, or
otherwise disturbing,’ then contact will most likely have a negative impact (ibid).
Language andLabelling
Careful use of language is also crucial to a non-discriminatory and inclusive
approach. Analogies between disease and war by referring to being ‘invaded’,
to having to ‘fight’ the virus or having to win the ‘battle’ feed anxiety and fear of
contagion (Logie and Turan 2020) that in turn play into stigma. Common use of
the word “vulnerable” could reinforce existing stereotypes of weakness and help-
lessness, particularly in relation to old age (Nifosi-Sutton 2017). Experiences with
NTDs are also instructive in terms of how language can contribute to discriminatory
discourse. With the term NTDs spanning almost forty diverse diseases, the words
‘neglected’ and ‘tropical’ provide little understanding of the diseases and their
health impacts. Instead, they point to a socially constructed category that is reflec-
tive of environmental determinism and denial of systematic marginalisation that
have allowed these diseases to persist (Shahvisi 2019). Thus, the term and category
‘Neglected Tropical Disease’ is itself stigmatising, with those suffering from NTDs
have been ‘cast off’ and often experiencing isolation, discrimination, and prejudice
in their own communities. These lessons are instructive in terms of language used
to categorise flu-like (such as COVID-19) diseases as Asian, and how it gives rise
to accompanying discriminatory language that borders on hate-speech. While WHO
introduced guidelines in 2015 to halt the naming of diseases in relation to their ori-
gin, this does not prevent the association of diseases with their place of origin from
popular discourse with politicians and media being common culprits, as is the case
for COVID-19 (Nature 2020).
WHO published recommendations regarding appropriate language in rela-
tion to COVID-19, highlighting that ‘words matter’ (WHO 2020). This includes
avoiding references to place of origin of the virus, using accurate terminology,
and refraining from hyperbolic language that instils fear such as ‘plague’ (ibid).
Referring to those infected with COVID-19 and spreading the virus as ‘super
spreaders’ or those who breach distancing measures as ‘intentional murderers’
creates a division between the ‘moral us’ and ‘immoral other’ (Logie and Turan
2020). Similarly, referring to those who may be infected as ‘COVID suspects’
may prevent people from seeking healthcare (Sotgiu and Dobler 2020).

1605
COVID-19 inLMICs: The Need toPlace Stigma Front andCentre…
Transparency andAccountability
It follows that governments and decision makers need to be transparent about the
processes and actions that underlie their policy and legal choices. Monitoring and
adequate reporting of policies, laws and legal cases is integral to the rights-based
approach, also referred to as ‘policy surveillance’ (Amon 2014). Policy surveillance
can provide an analytical tool to assess prevalence and trends, and ‘can facilitate
the evaluation of health laws, health rights, and accountability mechanisms’ (ibid).
Rights-based approaches have diverse meanings and are subject to different inter-
pretations, depending on the actors involved (Miller 2010). It is therefore important
to consider and make explicit the differing agendas that different actors might have.
Doing so lays the foundation for the agreement that ‘duty-bearers’ meet their obliga-
tions and ‘rights holders’ claim their rights (WHO 2009) according to (1) the avail-
ability of facilities, good and services, (2) accessibility based on non-discrimination,
physical, economic, and information accessibility, (3) acceptability in regards to
medical ethics, culture, and sensitivities to age and gender, (4) quality of services
and care both scientifically and medically (ibid).
Bringing the issue of stigma front and centre is crucial to ensure transparent and
accountable policy design and implementation. Disease elimination criteria often
stipulate that programs ‘count’ disease burden and morbidity to claim success, while
issues like stigma are less tangible and more difficult to address. However, given the
early onset and persistence of stigma, seeking to prevent and minimise it during and
after disease outbreaks is paramount (Overholt etal. 2018). Doing so necessitates
the inclusion of measures to assess and evaluate reductions in stigma. Although the
measurement of stigma is complex, the scientific understanding of stigma depends
on our capacity to observe and measure it (Link etal. 2004). In a review of health-
related stigma (Van Brakel 2006) identified five common approaches to measure-
ment, ranging from surveys of attitudes towards those with certain health condi-
tions to interviews with those affected by such health conditions. These tools ought
to be located in specific structural and cultural relations to facilitate the important
distinction between the consequences of health-related stigma and a cross-cultural
theory of health related-stigma (ibid). For example, stigma experiences and prac-
tices associated with HIV and NTDs might manifest similarly, yet they are products
of entirely different structural drivers and facilitators (Scambler 2009). This exem-
plifies the need for a biosocial perspective of COVID-19-related stigma, locating
it within wider structural and institutional systems as opposed to narrowing under-
standings to what happens at intra- and interpersonal levels (Logie and Turan 2020).
Pressure towards continued focus and attention can come from communities
themselves and, in part, stigma can serve as an important catalyst for doing so. As
noted above, affected groups can become agents of change with stigma serving
as a catalyst. What we have learned from HIV activism over many years is that
struggles are on-going; they require enduring attention, often beyond the mantras
of inclusive policy actions or anti-stigma frameworks in the international commu-
nity. Better conceiving stigma can provide a model of addressing such concerns,
helping to promote meaningful health promotion action in terms informed by
understandings of the relation between lived experience, structural vulnerabilities

1606
K.Roelen et al.
and (scientific) knowledge communities. Crises typically entail the coming
together of experts in attempts to define and resolve a problem to hand—such as
a virus and its associated social, political economic effects. What we advocate
for here is a conscious broadening of expertise, to include sociological and other
experiential knowledge about stigma as it informs life-worlds of inequality within
which COVID-19 is intrinsically interconnected.
Conclusion
It is widely acknowledged that stigma negatively impacts health practices and out-
comes, reinforces structural inequalities and undermines equitable development.
Emerging evidence suggests that stigma associated with COVID-19 is unfold-
ing rapidly, both manifesting itself as a new stigma and facilitating the expres-
sion of existing stigma. Against this backdrop, this article aimed to assess the
driving factors and markers of COVID-19-related stigma and to reflect on how
the response to COVID-19 can counteract such stigma, particularly in LMICs.
We did so by drawing on lessons learned from other disease-related stigma and
stigma markers such as old age, disability and poverty in LMICs.
We find that COVID-19-related stigma is already taking hold across LMICs.
Rapid spread of misinformation fuels misconceptions and false beliefs about
how the virus spreads and who may be ‘carriers’ of disease. This in turn feeds
already strong fears of contagion, offering further fertile ground for stigmatisa-
tion of those who have been or are suspected of being infected by the disease or
risk infecting others. These dynamics are further reinforced by efforts to contain
the virus that hinge on separating and isolating vulnerable groups and infected
individuals. Poverty, precarious and unstable living conditions, ethnicity and ori-
gin, age and gender present fault lines along which stigma is compounded and
reinforced.
A rights-based and inclusive approach to policy that includes the principles of
participation, non-discrimination, and accountability is vital. COVID-19 policy and
health programmes need to focus on disease elimination or transmission interrup-
tion, but they must also ‘count what counts’ through research into stigma and inter-
secting vulnerabilities, as well as the conditions which produced the stigma in the
first place. Accounting for and monitoring the interplay between factors at the inter-
and intrapersonal, institutional and structural levels is vital for moving beyond a top-
down and individualistic approach. Before stigma policy and programmes can be
implemented, we must explore what rights violations have contributed to COVID-
19 stigma and what new violations have emerged due to COVID-19 stigma.
In sum, COVID-19-related stigma in LMICs is a real force to be reckoned
with. Not only does it undermine basic levels of dignity, it also causes new types
of vulnerabilities, reinforces pre-existing inequalities and ultimately poses a threat
to effective containment of COVID-19. In order to be equitable and effective, the
response to COVID-19 in LMICs requires the issue of stigma to be placed front and
centre to its approach.

1607
COVID-19 inLMICs: The Need toPlace Stigma Front andCentre…
Acknowledgements This work was supported by the National Institute for Health Research (NIHR)
Global Health Research Unit on NTDs at Brighton and Sussex Medical School using Official Develop-
ment Assistance (ODA) funding. The views expressed here are those of the author(s) and not necessarily
those of the NIHR or the Department of Health and Social Care.
Compliance with Ethical Standards
Conflict of interest On behalf of all authors, the corresponding author states that there is no conflict of
interest.
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Aliations
KeetieRoelen1 · CarolineAckley2· PaulBoyce3· NicolasFarina4·
SantiagoRipoll1
Caroline Ackley
c.ackley@bsms.ac.uk
Paul Boyce
p.boyce@sussex.ac.uk
Nicolas Farina
N.Farina@sussex.ac.uk
Santiago Ripoll
s.ripoll@ids.ac.uk
1 Institute ofDevelopment Studies (IDS), University ofSussex, Library Road,
BrightonBN19RE, UK
2 Global Health Research Unit, Brighton andSussex Medical School, University ofSussex,
BrightonBN19PX, UK
3 School ofGlobal Studies, University ofSussex, BrightonBN19SJ, UK
4 Centre forDementia Studies, Brighton andSussex Medical School, University ofSussex,
BrightonBN19PX, UK