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

Access to healthand financial burdens to individuals, families andcommunities, and in some cases they accentuatemarginalization because the diseases and their consequencesare highly stigmatized.Leprosy and tuberculosis are among the most stigmatized,and individuals known to be infected are often excluded fromparticipating in social, economic and family life. Butdermatitis and blindness from onchocerciasis andlymphoedema from filariasis both also result inmarginalization, particularly for women with obvious diseasewho may lose family support and be subject to personalviolence. The psychosocial impact of such conditions maylead to reluctance to present for care, although in addition,affected individuals often lack the financial and otherresources to seek treatment.While there has been extensive research on HIV, includingin low- and middle-income countries, limited attention hasbeen paid to marginalization and discrimination againstpeople known to be infected, and the health implications ofthis. While in many countries legislation provides formalprotection of their rights, People Living With HIV/AIDS(PLWHA) often face direct and structural discrimination intheir daily lives and are severely socioeconomicallydisadvantaged. This in part is because HIV is typicallyassociated with high-risk, marginalized activities – illicit druguse and sex work. Often people in these categories arediscriminated against for other reasons associated withgender, class, caste, poverty and ethnicity. Differentialtreatment by health staff exacerbates marginality and resultsin poorer overall health for PLWHA. For example, women whoconceive often receive inadequate or no prenatal care and donot disclose their HIV status at delivery; disrespectful anddiscriminatory treatment at health care facilities is a primarybarrier to disclosure and care.Individuals with physical and intellectual impairments areeverywhere poorer, marginalized and disabled by theircommunities. Social attitudes shape access to care, quality ofcare, risk factors of complications and co-morbidity. Access tocare is often inhibited because of inappropriatecommunication and discriminatory attitudes, systems andenvironments. Although disabled people have receivedrelatively little attention by public health services or themedical and health research community, there is growingevidence of their increased vulnerability, including to HIVinfection and targeted physical, psychological and sexualviolence and exploitation. Disabled people are less likely thanable-bodied peers to be included in health educationprogrammes, and information may be inaccessible dependingon the nature and severity of their impairments. Moregenerally, there is a lack of information about health andhealth services in accessible forms for disabled people, thereis little accessible information about rights, and poor physicalaccess to services, buildings and transport.Health status, life chances and life outcomes of individualsare all influenced by such social inequalities andmarginalization. Other people from marginalized groups –people who are homeless, misuse alcohol and illicit drugs, orare sex workers, for example – routinely experienceOther people from marginalized groups – people whoare homeless, misuse alcohol and illicit drugs, or aresex workers, for example – routinely experiencediscrimination, and again have poor access to healthservices, receive poorer quality care when they dopresent, and are at higher risk of infectious diseasediscrimination, and again have poor access to healthservices, 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 – sexualviolence, civil war, terror, and the long-term effects of war.This produces further violence and other adverse healthoutcomes, including increased gender-based violence as aresult of war, permanent injuries from bombs and landmines,and the sustained psychological and emotional toll of violentdisruption to civil society. In addition, damage toinfrastructure and the breakdown of basic services results inan increase in communicable disease, leading to furtherpoverty and inequality.One area addressed by the Global Forum for HealthResearch, where social marginalization has affected health, isin relation to sexual violence. Gender-based violence,including sexual violence, is pervasive, with short- and longtermnegative effects on women’s physical and mental health.Such effects include reproductive health problems, chronicillness, post-traumatic stress disorder, anxiety anddepression. Women subject to domestic violence and sexualviolence within and beyond the home are marginalizedbecause of assumptions about their role in provoking theabuse. They often lack access to counselling centres andshelters that could provide short-term protection and ongoingsupport. Little has been done to address the perpetration ofviolence and the deeply entrenched and systemic genderbiases that excuse – and even legitimize – men’s violent andabusive behaviour. Sexual violence in particular had receivedinsufficient attention from researchers, clinical practitionersand policy-makers, and for a long time was ignored as ahuman rights and health issue. The Sexual Violence ResearchInitiative (SVRI) of the Forum was launched to supportresearch and advocacy in this area in a variety of settings.The concept of the “10/90 gap” acknowledgesthe inequalities in scientific research that exist betweencountries and the health conditions that affect differentpopulations. But in addition, far less research is conductedabout people who are socially marginalized than about thosewith higher social status: people with physical impairmentsattract less research attention than those without impairmentsbut with curable conditions; people labelled as havingintellectual impairments receive less attention than thosewith common physical impairments; the elderly less thanyoung adults, and so on. Even less research is done withpeople who are socially marginalized. Rarely are theirperspectives, insights and knowledge, and activeparticipation considered when defining the research060 ✜ Global Forum Update on Research for Health Volume 4