Combining health and social protection measures to reach the ultra ...

Access to health
and financial burdens to individuals, families and
communities, and in some cases they accentuate
marginalization because the diseases and their consequences
are highly stigmatized.
Leprosy and tuberculosis are among the most stigmatized,
and individuals known to be infected are often excluded from
participating in social, economic and family life. But
dermatitis and blindness from onchocerciasis and
lymphoedema from filariasis both also result in
marginalization, particularly for women with obvious disease
who may lose family support and be subject to personal
violence. The psychosocial impact of such conditions may
lead to reluctance to present for care, although in addition,
affected individuals often lack the financial and other
resources to seek treatment.
While there has been extensive research on HIV, including
in low- and middle-income countries, limited attention has
been paid to marginalization and discrimination against
people known to be infected, and the health implications of
this. While in many countries legislation provides formal
protection of their rights, People Living With HIV/AIDS
(PLWHA) often face direct and structural discrimination in
their daily lives and are severely socioeconomically
disadvantaged. This in part is because HIV is typically
associated with high-risk, marginalized activities – illicit drug
use and sex work. Often people in these categories are
discriminated against for other reasons associated with
gender, class, caste, poverty and ethnicity. Differential
treatment by health staff exacerbates marginality and results
in poorer overall health for PLWHA. For example, women who
conceive often receive inadequate or no prenatal care and do
not disclose their HIV status at delivery; disrespectful and
discriminatory treatment at health care facilities is a primary
barrier to disclosure and care.
Individuals with physical and intellectual impairments are
everywhere poorer, marginalized and disabled by their
communities. Social attitudes shape access to care, quality of
care, risk factors of complications and co-morbidity. Access to
care is often inhibited because of inappropriate
communication and discriminatory attitudes, systems and
environments. Although disabled people have received
relatively little attention by public health services or the
medical and health research community, there is growing
evidence of their increased vulnerability, including to HIV
infection and targeted physical, psychological and sexual
violence and exploitation. Disabled people are less likely than
able-bodied peers to be included in health education
programmes, and information may be inaccessible depending
on the nature and severity of their impairments. More
generally, there is a lack of information about health and
health services in accessible forms for disabled people, there
is little accessible information about rights, and poor physical
access to services, buildings and transport.
Health status, life chances and life outcomes of individuals
are all influenced by such social inequalities and
marginalization. Other people from marginalized groups –
people who are homeless, misuse alcohol and illicit drugs, or
are sex workers, for example – routinely experience
Other people from marginalized groups – people who
are homeless, misuse alcohol and illicit drugs, or are
sex workers, for example – routinely experience
discrimination, and again have poor access to health
services, receive poorer quality care when they do
present, and are at higher risk of infectious disease
discrimination, and again have poor access to health
services, receive poorer quality care when they do present,
and are at higher risk of infectious disease. Increasingly too,
structural violence is punctuated with direct violence – sexual
violence, civil war, terror, and the long-term effects of war.
This produces further violence and other adverse health
outcomes, including increased gender-based violence as a
result of war, permanent injuries from bombs and landmines,
and the sustained psychological and emotional toll of violent
disruption to civil society. In addition, damage to
infrastructure and the breakdown of basic services results in
an increase in communicable disease, leading to further
poverty and inequality.
One area addressed by the Global Forum for Health
Research, where social marginalization has affected health, is
in relation to sexual violence. Gender-based violence,
including sexual violence, is pervasive, with short- and longterm
negative effects on women’s physical and mental health.
Such effects include reproductive health problems, chronic
illness, post-traumatic stress disorder, anxiety and
depression. Women subject to domestic violence and sexual
violence within and beyond the home are marginalized
because of assumptions about their role in provoking the
abuse. They often lack access to counselling centres and
shelters that could provide short-term protection and ongoing
support. Little has been done to address the perpetration of
violence and the deeply entrenched and systemic gender
biases that excuse – and even legitimize – men’s violent and
abusive behaviour. Sexual violence in particular had received
insufficient attention from researchers, clinical practitioners
and policy-makers, and for a long time was ignored as a
human rights and health issue. The Sexual Violence Research
Initiative (SVRI) of the Forum was launched to support
research and advocacy in this area in a variety of settings.
The concept of the “10/90 gap” acknowledges
the inequalities in scientific research that exist between
countries and the health conditions that affect different
populations. But in addition, far less research is conducted
about people who are socially marginalized than about those
with higher social status: people with physical impairments
attract less research attention than those without impairments
but with curable conditions; people labelled as having
intellectual impairments receive less attention than those
with common physical impairments; the elderly less than
young adults, and so on. Even less research is done with
people who are socially marginalized. Rarely are their
perspectives, insights and knowledge, and active
participation considered when defining the research
060 ✜ Global Forum Update on Research for Health Volume 4