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THE HUMAN RIGHTS APPROACH TO HIV/AIDS RELATED STIGMA: From Idealism to Operationalization Physicians for Human Rights- Health Action AIDS Campaign Action Group for Health, Human Rights, and HIV/AIDS Kampala, Uganda: 

THE HUMAN RIGHTS APPROACH TO HIV/AIDS RELATED STIGMA: From Idealism to Operationalization Physicians for Human Rights- Health Action AIDS Campaign Action Group for Health, Human Rights, and HIV/AIDS Kampala, Uganda Jasmine Dofeliz Pedroso SHH 259 Spring 2005 Molnar/Arnold Harvard School of Public Health

UGANDA: 

UGANDA

HIV/AIDS in Uganda: 

HIV/AIDS in Uganda first AIDS case 1982 Epidemic grew to have the highest infection rate in the world HIV prevalence increased rapidly through the 1980s and early 1990s then declined dramatically in the mid 1990s Garbus L, Marseille E. HIV/AIDS in Uganda. AIDS Policy Research Center, University of California San Francisco, Regents of the University of California; November 2003.

HIV/AIDS in Uganda: 

HIV/AIDS in Uganda 1.05 million Ugandans were living with HIV/AIDS by 2002 56.3% were women 80% between ages 15-45 84% via heterosexual transmission, 15% via MTCT 2 million orphaned 1.3 million AIDS deaths in Uganda, by 2000. Garbus L, Marseille E. HIV/AIDS in Uganda. AIDS Policy Research Center, University of California San Francisco, Regents of the University of California; November 2003.

The Ugandan Success Story: 

The Ugandan Success Story HIV incidence declined by two-thirds in just one decade Most attribute Uganda’s success to the targeted behavior change program of ABC: Abstinence, Be Faithful, and Condomize

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Rates of HIV infection are again on the rise From 6.1% in 2000 to 6.5% in 2001 Further declines will not be possible without major new prevention efforts.

From ABC to stigma: 

From ABC to stigma ABC program further stigmatized HIV/AIDS: Focused the message on promiscuous sex as the main risk factor for transmission Did not emphasized necessity of HIV testing, knowing, and sharing HIV status with others Gave little acknowledgement of the power dynamics of condom use and abstinence, Did not adequately address marital sex or the fact that one party's abstinence or faithfulness does not ensure the same from the other. Kasyate, Simon (2005) Living Positively with AIDS The Monitor (Kampala), March 25, 2005.

HIV/AIDS Related Stigma: 

HIV/AIDS Related Stigma defined as a demeaning attitude toward a particular group or person based on physical or behavioral characteristics, disease symptoms, or stereotypes results from: fear or moral judgment of certain people or groups, or about sexual activity that goes beyond social norms or religious teachings lack of education or understanding about how HIV is transmitted, prevented and treated fear of death and disease lack of recognition of stigma can come in the form of: physical isolation from family friends and the community gossip and condemnation loss of rights and social power self-stigma whereby an individual chooses to blame and isolate themselves. Alonzo A, Reynolds N. (2004) Stigma, HIV and AIDS: An exploration and elaboration of a stigma trajectory. Psychol Rep. 2004 Dec;95(3 Pt 1):771-9. Kidd R, Clay S. (2003) Toolkit For Action UNDERSTANDING AND CHALLENGING HIV STIGMA Trainers Guide September 2003.

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"As I examine stigma and its origin in relation to HIV and AIDS, it fits an uncomfortable equation; AIDS = SEX = SIN = DEATH". --Reverend Johanna P. Heath, a South African Anglican priest “In our African idiom we say, ‘A person is a person through other persons.’ None of us comes into the world fully formed.We would not know how to think,or walk,or speak,or behave as human beings unless we learned it from other human beings. We need other humans in order to be human..” --Archbishop Desmond Tutu, 2000. Kasyate, Simon (2005) “Living Positively with AIDS” The Monitor (Kampala), March 25, 2005. Kidd R, Clay S. (2003) “Toolkit For Action UNDERSTANDING AND CHALLENGING HIV STIGMA Trainers Guide” September 2003.

Impact of Stigma: 

Impact of Stigma Stigma and discrimination related to HIV/AIDS is a major barrier to timely, adequate, and respectful medical care: people who need testing, treatment, and care are too afraid to get it, get it too late, or do not get it at all. may result in treatment noncompliance gives low-risk groups a false perception of safety increases likelihood of high risk behaviors that may increase transmission

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US-based non-profit dedicated to raising awareness of human rights in the field of medicine, documenting and exposing human rights violations through medical and scientific means, and bringing justice to the victims and survivors of human rights violations. MISSION: to use the voice of health professionals, physicians in particular, to promote health by protecting human rights.

Health Action AIDS Campaign: 

Health Action AIDS Campaign A joint project of PHR and Partners in Health Involves several satellite projects and partners all over the world, including the Action Group for Health, Human Rights, and HIV/AIDS (AGHA) in Uganda.

Action Group for Health, Human Rights, and HIV/AIDS (AGHA): 

Action Group for Health, Human Rights, and HIV/AIDS (AGHA) Founded in July 2003, based in the Ugandan capital city of Kampala. MISSION: to raise awareness of all health care providers and the communities they serve in Uganda about the human rights aspects in health with an emphasis on HIV/AIDS, employing a holistic approach in realizing the full and harmonious development of health rights as pertains to human dignity.

Uganda AIDS Advocacy Network: 

A joint initiative of US-based PHR and Uganda-based AGHA. MISSION: to connect Ugandan health professionals within and between regional districts to help them understand and embrace their potential role in AIDS advocacy- particularly in the alleviation of stigma and discrimination in the health care setting and through the provision of universal access to anti-retroviral treatment. Uganda AIDS Advocacy Network

The Human Rights Approach: 

The Human Rights Approach not only asserts and protects rather than merely limits rights and can be used as a guide for formulating concrete social actions. Human rights can be used to analyze existing or proposed programs or policies to rally and empower health workers and community members around a single issue or as a legislative tool to hold governments accountable for rights violations

Human Rights as Ugandan Rights: 

Human Rights as Ugandan Rights African Charter on Human and Peoples’ Rights protects the Right to Health (Uganda ratified 1981) : “Every individual shall have the right to enjoy the best attainable state of physical and mental health…States shall take the necessary measures to protect the health of their people and to ensure that they receive medical attention when they are sick.” (article 16) Ugandan Right to Health also legally ensured by: Universal Declaration on Human Rights Intl Covenant on Economic, Social and Cultural Rights Intl Covenant on Civil and Political Rights African [Banjul] Charter on Human and Peoples' Rights. Organization of African Unity, adopted June 27, 1981.

The Right to Health: 

The Right to Health Rights to health care and to determinants of health, including food and nutrition, housing, access to safe water and adequate sanitation, safe and healthy working conditions, and a healthy environment Access to health facilities, goods and services on a non-discriminatory basis, especially for vulnerable or marginalized groups Access to essential drugs Equitable distribution of all health facilities, goods, and services Special focus on meeting the needs of vulnerable groups and marginalized populations

Respecting, protecting and fulfilling these rights is key to the human rights approach to AIDS stigma.: 

Respecting, protecting and fulfilling these rights is key to the human rights approach to AIDS stigma. Freedom from discrimination ==> alleviate the shame and self-condemnation, increased testing, help seeking and open status Right to treatment ==> longer more productive lives, resumed social roles

Operationalizing Human Rights: 

Operationalizing Human Rights means transforming and translating the notion of human rights from a concept or treaty into a tool involves a shift in the collective conceptualization of the AIDS from one of shame and blame to support and understanding requires active grassroots realization of the link between health, human rights and HIV/AIDS

“While Africa’s human rights problems are immense, even ubiquitous, most of our people do not describe their problems in human rights terms.”: 

“While Africa’s human rights problems are immense, even ubiquitous, most of our people do not describe their problems in human rights terms.”

Anthropology and Human Rights: 

Anthropology and Human Rights The fight against AIDS-related stigma needs subjectively-informed, internally coherent, accessible and realistic HIV treatment protocols and programs that work within the local Ugandan cultural context. “They will not build their struggle around the notion of human rights unless that language and those who wish to popularize it speak directly to their aspirations and survival.” Odinkalu, Chidi Anselm. (2005) Why More Africans Dont Use Human Rights. Carnegie Council on Ethics and International Affairs.

The Health and Human Rights movement needs Anthropology: 

A more anthropologically-informed Human Rights approach will: tap into the patients illness narrative to get at the actual local meanings of HIV positivity, addiction, treatment, pain, suffering, and survival analyze what the real roots of stigma are and find how best to address them inform human rights programs and policies such that they are culturally appropriate give insight on the process of transforming the collective notion of AIDS = Sin = Death introduce historical, economic and social perspectives HIV programs and agendas The Health and Human Rights movement needs Anthropology

Anthropology’s role in alleviating AIDS-related stigma: 

Anthropology’s role in alleviating AIDS-related stigma Identifying sources of stigma in private and public health care systems and finding ways to measure it Scaling up VCT, PMTCT and ART to rural and other vulnerable populations in ways that are socially, economically, and culturally accessible to them Designing reintegration programs for AIDS-affected orphans Improving the HIV patient satisfaction Increasing accessibility of treatment and care Rebuilding skills and knowledge lost through premature death

Realizing Human Rights: 

Realizing Human Rights In time, as more Ugandans learn how to use Human Rights as a tool, AND as PHR-AGHA learn more about the local social construction of AIDS related stigma, including how to identify it and how best to address it, the Uganda AIDS Advocacy Network will at last have the clout and critical mass to claim what is theirs and the create real lasting progress in the fight against AIDS through advocacy at the local and national policy level.

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Thank You

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