STIGMA IN THE ERA OF HIV/AIDS AND ITS CONSEQUENCES FOR PUBLIC POLICY DR. SHEILA NDYANABANGI PMO- MENTAL HEALTH MINISTRY OF HEALTH

INTRODUCTION Following decades of dealing with the devasting epidemic of HIV/AIDS the world celebrated the discovery of ARV treatment. Although the scaling up of ART has restored hope of life to the population, despite HIV/AIDS, stigma remains a key barrier to delivery of quality HIV/AIDS services, utilization of the services as well as prevention of further transmission. Stigma in the context of HIV/AIDS has varied definition by different people.

Continuation It is a powerful , discrediting and tainting social label that radically changes the way individuals view themselves and are viewed by others. Stigma is associated with feeling of low value, exclusion , disadvantage and usually leads to discrimination. Stigma causes suffering and associated with shame and silence.

How does stigma manifest? Neglecting PLWHA and PLWHA can also neglect responsibilities . Fearing to be infected, person looked at as contagious by others Avoiding e.g. People not wanting to interact in social setting or community Rejection – by relatives, husbands or wives Labeling- making reference to a person using their HIV status Neglecting- service e.g. mother with HIV in labour- babies have fallen down etc. 1/11/2019

contd Abusing- referring to an HIV status as an abuse Gossiping- when seen at HIV clinic – inform the whole village- even health workers gossip Self stigma- PLWHA devaluing themselves Social withdrawal- avoid interaction for fear of reaction of others including from sex in marriage Self exclusion- decide to live lonely life Fear of disclosure of ones HIV status, leading to further transmission to partners

Effects of stigma Affects preventive behaviour- leading to continued transmission. Even condoms are stigmatized (even if for FP) Taking on risky behaviour in retaliation to stigma Fear of testing for fear of being identified and the consequences Reduced access to care and treatment e.g. HIV clinics with limited confidentiality – whole community knows the HIV clinic e.g Mild May Decreased access to HIV prevention services e.g. PMTCT(mothers fear break up if husband or in- laws knows)

contd Distress leading to chronic stress of vulnerable PLWHA leading to mental problems e.g. anxiety disorders, depression, psychosis and suicide Gender based violence- accused of infecting spouse etc Discrimination e.g. in schools for children and adolescents, workplace (denied promotion)discrimination in political settings (denial of political office)

contd PLWA may fear demanding their rights due to stigma and may not access justice Affects adherence to treatment- hiding ARVs, irregular taking of medicine or missing treatment dates of appointment

Causes of stigma Lack of adequate knowledge on transmission , course of HIV especially with the advent of ARVs. A lot not disclosed to public e.g. is it every encounter with PLWHA that one is infected? or knowledge of prophylaxis for rape victims The false explanatory model of immorality being the main factor in religious and cultural structures A safe environment of management of HIV- no confidentiality and poor protection for health workers. Separating the HIV clinic so that people equate going to that clinic with having HIV/AIDS.

Continuation Are the current HR equipped to deal with stigma and its effects? Is the training received by counselors which emphasize behavior change in HIV/AIDS adequate to address the consequences of stigma. Does the current data collection system for data on HIV/AIDS pick issues of stigma and its consequences? Include impact of denial of sex by spouses with HIV/AIDS.

Consequences for public policy Some interventions have been attempted but addressing stigma has not been prioritized despite the fact that it’s the biggest barrier to HIV management currently Most interventions used, not adequately evaluated for their impact in reducing stigma

Proposed interventions Provide accurate and complete information to the public and all Health Workers regarding transmission , nature and course of HIV e.g. issues of discordance not loudly talked about Review settings of HIV/AIDS management in health care settings. Issues of confidentiality, integration of HIV/AIDS in general care versus massive HIV/AIDS clinics that deny privacy Empowering PLWHA with life skills to confront stigma including their rights, do we need a law?

contd Livelihood programs for vulnerable PLWHA e.g. poor , women likely to suffer domestic violence or separation. Is there a fund to support such cases? Education programs for school children on stigma and its effects and rights of children with HIV/AIDS to keep them in school. School management to be liable to ensuring a positive environment More research on innovative methods which are cost effective such as interpersonal group approaches to deal with stigma including self stigma Community dialogue on HIV/AIDS to increase knowledge and demystify HIV /AIDS

contd Engage religious and cultural institutions on stigma and its effects to counteract the beliefs about immorality and HIV/AIDS The institutions should be encouraged to de- campaign stigma discrimination of PLWHA and provide for a for self support through fellowships Address mental health problems which causes double stigma by regular screening and management of those problems in HIV treatment services

Conclusion Uganda is seeing an increase in HIV/AIDS cases despite previous success in massively reducing prevalence The focus on ART without appropriate interventions to address stigma and its effects is likely to rob us of our success There is need to study and establish innovative interventions that are contextually relevant to sustain and increase gains in the HIV/AIDS war, including addressing stigma