The stigma of tuberculosis

1. Newsdesk
www.thelancet.com/infection Vol 11 September 2011 663
For more on Via Libre see
http://vialibre.org.pe/
For more on Innovation for
Health and Development see
http://www.ifh ad.org/
For more on the public forum
see http://www.aidsalliance.org/
newsdetails.aspx?id=822
For more on Zambia AIDS
Related Tuberculosis see
http://www.zambart.org/
For more on the International
AIDS Alliance see http://www.
aidsalliance.org/
homepagedetails.aspx?id=1
For more on the TB Anti-Stigma
Toolkit see http://targets.lshtm.
ac.uk/resources/Publications/
TB_and_Stigma_Eng2.pdf
The stigma of tuberculosis
In the mid-19th century, colloquial
names for tuberculosis, such as the
white plague, with reference to the
pallor common in patients with
tuberculosis, and consumption,
refl ecting the atrophy of an infected
body, engendered fear of the disease
and those with it. This fear often led to
stigmatisation; although the disease is
now much better understood, fear and
stigma remain and create barriers to
eff ective management. The importance
of stigma in relation to tuberculosis
control has been emphasised in recent
months, with non-governmental
organisations, such as Via Libre in Peru,
raising awareness of this issue in public
health campaigns.
“When people are stigmatised
for having a particular disease there
is usually an implicit assumption
that they have brought it upon
themselves and this helps justify
the stigmatisation. So, it becomes
a socially constructed, self-fulfi lling
process”, explains Anna Waldstein
(University of Kent, Canterbury, UK).
Stigma could be defi ned as a form of
“structural violence”, a term coined by
Johan Galtung in the 1960s. Although
the word violence conjures images of
physical harm, Galtung used it to refer
to social structures that cause harm
by preventing people from achieving
their basic needs; the omnipresence
of these structures, such as stigma,
contributes to their normalisation in
society. “As anthropologists, we see
stigma research as frequently being
too individualistically focused, and
need to broaden the concept out to
encompass historically determined
and structural inequalities”, suggests
Ian Harper (University of Edinburgh,
Edinburgh, UK).
Most deaths associated with
tuberculosis occur in developing
countries, with the disease mainly
aff ecting the poor. “The developing
world lives in a soup of tuberculosis,
and that’s one of the things that makes
tuberculosis control so diffi cult, because
we’re not just trying to diagnose and
treat active disease, but we also have
to deal with an adult population, half
of whom are latently infected and any
time they get immunosuppressed,
malnourished, HIV infected, or for no
apparent reason, that latent infection
can reactivate into active disease”, says
Carlton Evans (IFHAD: Innovation For
Health and Development, Lima, Peru).
In the coastal city of Lima, Peru,
the tuberculosis incidence is about
232 cases per 100 000 people, and in
the shantytowns, which drape over
the nearby cliff s surrounding the city,
tuberculosis has reached hyperendemic
proportions. In environments with such
rampant spread of tuberculosis, disease-
related stigma becomes increasingly
visible, especially towards women
whose economic and social foundations
are shattered by the disease. “There
is a lot of neglect of female health
because of deeply engrained societal
norms in the macho Latin culture”, says
Evans. “In the shantytowns, there is a
perspective that female health is less
important than male health, because
women ‘just stay at home and look
after the kids’, whereas men are relied
upon to bring in the money and the
food and therefore have to be healthy
and receive health care, otherwise the
family would starve.”
Because single women with tubercu-
losis can have diffi culty in fi nding
partners, they might conceal their
illness for fear of isolation. As a result
they might avoid access to free tuber-
cu losis diagnostic facilities. “In a worst-
case scenario, some individuals may
feel so stigmatised that they avoid
seeking any help whatsoever”, says
Waldstein.
Evans told TLID that womens’ poor
interaction with the tuberculosis
health-care system in Peru is partly
because the health of women is
undervalued and partly because they
fear a positive diagnosis. Disease-related
stigmatisation can become so extreme
that these women can be completely
ostracised by their families, therefore
“women keep their tuberculosis a secret
because they are afraid of being kicked
out of their home”.
The reduction of tuberculosis-
related stigmatisation in Peru was
highlighted in a public forum earlier
this year by Via Libre, an organisation
that has provided services to people
aff ected by HIV and AIDS in Peru since
1990. An agreement was successfully
brokered in which the national
tuberculosis and HIV plan would
incorporate a number of Via Libre’s
recommendations, which included the
reduction of stigmatisation through
education at a community level, by
means of strengthening community
organisations and providing training
to health-care workers and community
leaders.
Women in Zambia also face similar
social crises. In this deeply patriarchal
society, women’s rights are extremely
limited; they depend on strong social
networks to sustain their reputation
and garner support, and are dependent
on men for the provision of housing,
security, and money. However, women
infected with tuberculosis can become
the subject of gossip and ridicule.
“Being discredited can break down
these networks and reduce [womens’]
social capital”, explains Virginia Bond
(Zambia AIDS Related Tuberculosis
[ZAMBART] Project, Lusaka, Zambia).
Therefore, such loss of social capital
could be catastrophic.
Tuberculosis has reached hyperendemic proportions in the shantytowns of Lima
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2. Newsdesk
664 www.thelancet.com/infection Vol 11 September 2011
In Zambia, tuberculosis infection
can sometimes lead to accusations
about an individuals’ sexual activity,
because these patients are assumed
to have become infected through
frequent and illicit sex. In an attempt
to address such myths and combat
the associated stigma, ZAMBART and
the International Aids Alliance have
developed the TB Anti-Stigma Toolkit.
“The toolkit aims to help diff erent
audiences recognise tuberculosis
stigma and then addresses the main
driving forces of stigma through
participatory exercises that draw on
experiences. The toolkit has helped
initiate dialogue between patients
and families, patients and health-care
workers, and within other groups (eg,
the church)”, says Bond.
Many patients with tuberculosis
are co-infected with HIV. In 2009,
1·2 million new cases of tuberculosis
were in people also infected with
HIV, according to WHO estimates.
Stigma associated with tuberculosis
can be intensifi ed when patients are
co-infected with HIV. “Tuberculosis
is now perceived as a cousin of HIV
and sometimes even as the same
disease. Both diseases carry a fear of
infection (more so with tuberculosis),
and are linked to death and extreme
illness”, says Bond. The inter-relation
between stigmatisation associated
with tuberculosis and HIV can be
seen in the alteration of the patients’
identity. A nickname for patients with
tuberculosis in Zambia is Kanayaka.
“This means ‘the light is on’ and refers
to a clear sign of impending death
and extreme frailty; such names are
often interchangeable [for patients
with HIV]”, explains Bond. In African
populations living in the UK, patients
with tuberculosis who were co-infected
with HIV also perceive stigmatisation
to be worse.
Curiously, tuberculosis was once
regarded as an extension of identity and
individuality of 19th century artists and
intellectuals among the upper classes of
industrialised societies, its symptoms
representing the outer manifestation
of an exceptional inner character.
Indeed, tuberculosis was considered to
be an inevitable consequence of the
excessive and extravagant lifestyles
led by these individuals. However,
this romantic attitude towards the
disease has long since faded. Although
tuberculosis is commonly associated
with the extremes of poverty that
pervade developing countries, it has
also regained a foothold in developed
countries. London, a diverse metropolis
and fi nancial heart of the UK, has
become the tuberculosis capital of
western Europe. In the London
borough of Wandsworth, substantial
amounts of stigma associated with
tuberculosis have been identifi ed in
minority ethnic populations. Between
1999 and 2009 the number of new
cases of tuberculosis identifi ed in
London increased by 50%.
“The increase in the number of
tuberculosis cases seen in the UK in
2009 was in diverse ethnic groups”,
says Alimuddin Zumla (University
College London Medical School,
London, UK). “The risk of tuberculosis
infection is higher in socially excluded
people such as drug or alcohol abusers,
prisoners, homeless people, and
illegal migrants.” These marginalised
groups, who already expect and
experience rejection (eg, people with
a history of substance abuse receive
lower wages and have diffi culty
renting accommodation), might
face further stigmatisation, similar
to that encountered by patients with
tuberculosis who are co-infected with
HIV. “Waves of discrimination can
follow the categorisation of certain risk
groups, and [ongoing discrimination]
is likely to be dependent on long
histories of marginalisation outside
of the disease itself”, adds Harper.
This additional stigmatisation could
lead to further social isolation,
reduced health-seeking behaviour,
and poor adherence to therapy, and
could contribute to a continued rise
in the number of tuberculosis cases
and compound the problem of drug
resistance.
Biomedical approaches for the
treat ment of tuberculosis are vital,
but they alone cannot subdue
the looming threat posed by this
disease. “Treatments will work only
if they make sense to people. Simply
prescribing antibiotic drugs for
infectious diseases may not be enough
to heal people”, postulates Waldstein.
The socioeconomic factors that drive
the spread of tuberculosis are of equal
importance to any biomedical inter-
vention. For example, in Peru, delays
in test-seeking for tuberculosis were
longest in patients who believed that
the disease was common and curable.
Health-promotion campaigns attempt
to reinforce the belief that the disease
is widespread and treatable to reduce
stigma and improve health-seeking
behaviour. Therefore, this paradoxical
fi nding suggests that some campaigns
could have counterproductive eff ects
on public health. “We shouldn’t
assume that a seemingly sensible
public-health-promotion message
is going to be benefi cial; we need to
evaluate these messages and actually
see what works”, warns Evans. “We
work in a public health tuberculosis-
control community with an incorrect
emphasis, with a pre occupa tion with
biomedical systems and interventions,
and with a damaging neglect of the
complemen tary socio economic issues,
which should not be the emphasis, but
warrant greater exploration.”
Mario Christodoulou
Biomedical approaches alone cannot subdue the threat posed by tuberculosis
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