Presented by
Paul Toh
GIPA Advisor
UNAIDS SEAPICT

Background on Stigma and Discrimination

The epidemic of fear, stigmatization and discrimination first described by Jonathan Mann (1987) has undermined the ability of individuals, families and societies to protect themselves and provide support and reassurance to those infected.

The London Declaration on AIDS Prevention following the World Summit of Ministers of Health on Programmes for HIV Prevention in January 1988 was one of the first international statements to recognize that :

“Discrimination against, and stigmatization of, HIV-infected people and people with AIDS and population groups undermine public health and must be avoided”

In 1989, the United Nations Centre for Human Rights organized the first international consultation on HIV/AIDS and human rights. This reaffirms the public health rationale for the prevention of HIV/AIDS related discrimination and the promotion and protection of human rights in the context of HIV/AIDS.

In late 1996, the second international consultation on HIV/AIDS and human rights was convened jointly by UNAIDS and the Office of the High Commissioner for Human Rights. Over here, 12 international guidelines on HIV/AIDS and human rights were drafted.

International human rights law seeks to gurantee freedom from discrimination on many grounds including sex, race, language, religion, political opinion, birth or other status. In Resolutions 1995/44 and 1996/43, the UN Commission on Human Rights confirmed that the phrase “other status” is to be interpreted as incorporating health status, including HIV/AIDS. This means that discrimination against people living with HIV/AIDS or those perceived to be at higher risk of infection is legally prohibited.

Resolution 49/1999 of the UN Commission on Human Rights reaffirms that:

“Discrimination on the basis of HIV or AIDS status, actual or presumed is prohibited by existing international human rights standards, and that the term, ‘or other status ‘ in non-discrimination provisions in international human rights texts should be interpreted to cover health status, including HIV/AIDS”

Stigma and HIV/AIDS

Sociologist Erving Goffman(1963) defined stigma as a “ significantly discrediting” attribute possessed by a person with an “undesired difference”

Stigma is also a powerful means of social control applied by marginalizing excluding and exercising power over individuals who displays certain traits

Gilmore & Somerville (1994) have described what they see as the four main features of any stigmatizing response as :
* The problems that initiates the reaction.
* The identification of the group of individual to be targeted.
* The assignment of stigma to this individual or group.
* The development of the stigmatizing response.

Felt stigma often precedes enacted stigma and may limit the extent tow hich the latter is experienced ie PWAs that are aware that many other PWAs have been treated badly by others may want to conceal their serostatus.

Forms of HIV/AIDS-related stigmatization, discrimination and denial
Societal and community level

Generally,laws, rules , policies and procedure may result in the stigmatization of people with HIV/AIDS. In view of this , a significant number of countries have enacted legislation with a view to controlling the actions of HIV/AIDS affected individuals and groups.

These laws include :
* Compulsory Screening and testing of groups and individuals
* Prohibition of people with HIV/AIDS from certain occupation and types of employment
* The medical examination, isolation, detention and compulsory treatment of infected persons
* Limitation on international travel and migration
* Restriction of certain behaviours such as injecting drug use and prostitution

Individual Experience

People’s experience of HIV/AIDS related stigmatization and discrimination is affected by commonly held beliefs forms of societal stigmatization and factors such as the extent to which individuals are able to access supportive networks of peers family and kin.

1. Overall, the negative depiction of people living with HIV/AIDS - reinforced by the language and metaphors used to talk and think about the disease
2. The impact of HIV/AIDS on women is particularly acute
3 Individual denial of risk and vulnerability is not an uncommon response to the epidemic.

Stigma and Discrimination - Moving from Evidence to Advocacy

From evidence we see stigma and discrimination is obstructive to HIV/AIDS prevention and care, therefore we hereby look into the advocacy to cope in this area.

1. Political Advocacy.
Visibility and openness about HIV/AIDS are prerequisites for the successful mobilization of government and community resources to respond to the epidemic. This deter PWAs from being open about the status and governments need to administrate laws to protect PWAs to fight public stigma.

2. Sharing of Best Practices with respect to existing codes and legislative framework. This contribute to international efforts ensuring that HIV/AIDS discrimination is reduced and its effects ameliorated.

3. More systematic research needed
Given the intensity of activity , it may be surprising to learn that relatively little systematic research has taken place on the forms that HIV/AIDS related Stigmatization and discrimination take, the different context in which they occur and their varying determinants

4. Higher profile of stigma and discrimination at conference
Review of abstract from recent regional and international conference on HIV/AIDS shows that the majority of papers dealing with such concerns focus either on individual cases or experiences or on the role of NGOs in exerting pressure on governments and national authorities to act and prevent further discrimination.

5. PWA Empowerment
Empowering HIV positive people has always been the key in the past to move forth GIPA(Greater Involvement of PWAs) and fight stigma and discrimination. People with HIV/AIDS must be empowered enough to fight for their rights and place in societies.

Recommendations

Among People with HIV/AIDS(PWAs)

* PWAs need to be better educated about their rights as patients and about how to
get help to challenge the discrimination and stigmatization they face in health care settings

* PWAS need legal education and access to the justice system to address the
violation of their rights in the context of employment and education

* A more enabling environment need to be created to increase the visibility of
PWAs groups so that discrimination, stigmatization and denial can be challenged collectively

In the Health Care Sector

* Concept of universal precautions needs to be promoted and the irrational and
selective use of inappropriate “safety measure” reduced.

* Human rights principles of informed consent and confidentiality need to be more
widely adhered to in medical practice so that health care staff and professionals do not violate patients’ rights to informed choice, privacy and counseling

* Newer concept and labels such as “barrier nursing” or “immune compromised
patient” are becoming synonymous with HIV/AIDS and hence serve the same function as the label AIDS. These concepts need to be used for all types of infections without revealing the nature of infection tos taff involved in providing care.

* There is an urgent need to extend awareness among health care staff concerning
their legal duties and responsibilities towards patients in general and patients with HIV/AIDS in particular

* Necessary protective gear, including good quality gloves must be supplied in
adequate quantities to all staff in government hospitals so that the non- availability of such items is not sued as an excuse to deny care to HIV+ patient

* Mandatory testing must be strongly discouraged for individual, including
pregnant women, regardless of what treatment they seek as it often leads to denial of services to those found to be HIV positive

* Counseling services must be made available to all health facilities to provide the
psychosocial needs of HIV-positive patients

- To help individuals who wish to learn of HIV status without the fear of disclosure
to others, voluntary testing accompanied by counseling must be provided in all cities and districts

* Lack of adequate AIDS education can give rise to irrational fears and
inappropriate care practices. Hospitals staffs at all levels need access to appropriate HIV/AIDS education. No medical institution should be allowed to withhold or limit HIV/AIDS education to any groups of staff.

* HIV testing should not be carried out without the informed consent of patient and
without pre-and-post test counseling. Treatment and care must be provided following positive test results

* Above all, in order to reduce levels of discrimination within the health care sector, it is important to challenge beliefs about casual modes of HIV transmission and address the diffuse and irrational sense of personal risk among staff

* Anti-Discrimination Legislation and Other Legal Measures
Legislation is needed to reduce discrimination and stigmatization of PWAs in all
areas but particularly in relation to health care and employment

* Effective complaint mechanism should be put in place in the health care sector
for HIV+ people to seek protection of their rights as patients

* Fear-based AIDS messages and biased social attitudes towards infected people
urgently need to be tackled, as fear and prejudice lie at the core of discrimination, stigma and denial

* It is not enough to raise awareness about HIV/AIDS, its transmission routes , or
even about legal rights. What is urgently needed is anti-discrimination policy supported by a law that will ensure the protection of HIV+ people rights

* Employment sector must develop policy guidelines on AIDS to help and support
HIV+ workers

* Child care institutions must not be allowed to transfer responsibility for care and
protection of HIV infected children to other institutions

* Life insurance polices must be expanded in appropriate ways to address the
needs of HIV+ people desiring insurance cover and efforts must be made to
dispel misconceptions and fears about claims to existing insurance policies.