AIDS Stigma and Discrimination in India

[Guest guest]

Cross posted from < procaare@... >

- McGee

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Dear Colleagues,

In order to understand the impact of stigma and discrimination on

home and community care for PLWHA in India, it is necessary to hear what

PLWHA and people working in the field of HIV/AIDS are saying:

Firstly, Dr Bharat's 1999 study, " HIV/AIDS Related Discrimination,

Stigmatization and Denial in India - A Study in Mumbai and Bangalore "

found that:

* Doctors and NGO's acknowledged that healthcare settings were a

major source of discrimination

* Differential treatment and fear of contagion expressed at time of

death were a great source of anguish and distress for positive people

in Mumbai

* In hospitals, it was common for there to be refusal to treat PLWHA,

refusal to admit PLWHA, physical isolation whilst in the wards, early

discharge and mandatory testing

* In the home and community it was common for PLWHA to have family

relationships severed, the denial of property rights and blocked

access to financial resources, physical isolation in the house, the

blocking of access to spouses and children and the denial of death rituals

The Freedom Foundation, a drug and alcohol service now providing care

and support services for PLWHA based in Bangalore, recently conducted

a survey amongst HIV positive users of its service. Of the 210 PLWHA it

surveyed:

* 87% said they had no knowledge that they were being tested for

HIV/AIDS at the time of testing

* 31% reported having been shunned by the doctors and other hospital

staff and had been discharged immediately.

* 92% of those spoken to informed interviewers that their status was

revealed to a relative without prior consent.

* 50% said that they were told the results of the HIV test by a

relative.

* 27% of them learned about their HIV positive status after coming

into a 'care & support' facility.

* 40% had been isolated/abandoned by their relatives due to their HIV

positive status.

* 15% were in contact with the family, but had to stay away from the

house

* 16% reported that the family was divided in their response.

Finally, the 1999 " Needs Assessment Study of People Living with

HIV/AIDS " conducted by the Indian Network of People Living with

HIV/AIDS found that:

* PLWHA interviewed often postponed seeking medial attention as the

process was perceived to be too strenuous - this impacted negatively

on PLWHA seeking treatment for opportunistic infections

* PLWHA respondents who had children said that schools refused to

admit their children, or that the children were treated insensitively by

teachers at the school

* Many PLWHA who participated were advised by their doctors not to

have sex, to avoid marriage and not to have children.

The stigma and discrimination that is occurring here in India is

located in all sections of society. Fear based messages have long

been the themes of AIDS awareness campaigns. The general community

associates HIV/AIDS with illness and death. Indeed in 1998 the Supreme

Court in Chennai (Madras) restricted the rights of HIV positive people

to marry.

For many PLWHA stigma and discrimination, it is felt most acutely

when accessing healthcare services. It's a fact here in India that PLWHA

do not access healthcare until they are symptomatic - undermining the

development of good health seeking behaviours necessary to stay

healthy.

When PLWHA do finally access the medical system, they are often

poorly treated, or receive no treatment at all. And so back home they return

to families who have no idea why this person is sick, what the

sickness is, nor how to care for their family member. Fear is a natural

response in this context. The questions then becomes: how can we encourage

home-based care for PLWHA, free of fear and discrimination, when

those paid to provide professional care and support are unable to do without

stigmatizing and discriminating?

In India currently there is an expectation that home-based care can

be provided by the community for PLWHA without any education or

sensitization of communities about what home-based care means. INP+

perceives the promotion of home-based care by some sections of the Indian

response to HIV/AIDS as a desire to offload their responsibility to provide

(i.e. fund) care and support onto the community. This ill managed process

simply invites a cloud of fear leading to the development of

discriminatory practices as people in the community, largely unskilled and

under-resourced, grapple with that fear.

There are many reasons why stigma and discrimination occur and many

other reasons why discriminatory practices are allowed to continue.

The absence of PLWHA in the provision of services such as home-base care

programs often reinforces perceptions that HIV/AIDS is a disease

about illness and death. This is simply not the case. Involving PLWHA in

service provision stands as a reminder that people are still valuable and can

contribute – indeed PLWHA are able to offer a level of peer support

necessary to sustain hope and confidence. The presence of PLWHA too,

serves as a block to the development of attitudes that allow fear and stigma

to flourish.

One particularly successful program for INP+ is currently developing

and promoting is the Positive Speakers Bureau. This program invites

PLWHA to act as positive speakers, speaking in the community about living

with HIV/AIDS, dispelling myths, answering questions, relieving

people of their fears. It is about providing a human face to the disease. The

program aims to wallop stigma and discrimination right out of the

ballpark by meeting and responding to the community's attitudes head on. It

allows the community to have their fears directly addressed by an HIV

positive person themselves thereby providing a level of authenticity

to the interactions.

INP+ has eight state level member organizations, many of whom are

involved in peer support programs. These organizations aim to reduce

the isolation that many PLWHA feel, thus empowering people to respond to

issues of discriminatory practices directly - in the personal arena

and on a community level. These organizations provide regular support group

meetings for positive people, act as referral points for PLWHA

seeking discriminatory free medical or social services and act as PLWHA

community capacity builders.

It is important that PLWHA are involved as primary decision-makers in

care and support as in many other areas of the response to HIV/AIDS.

This is not to say that affected people are not vital to the

response -

simply that in countries like India, PLWHA are currently not central

to the development of programs such as home-based care. This has

important consequences for the delivery of services based on perceived

needs rather than actual needs and allows for misplaced perceptions to

harden into prejudice and discriminatory attitudes.

However, change is a slow process, and changing community and

official attitudes particularly so. So experiences on a personal level,

Such as contact with positive speakers, need to be complemented by systemic

change. To this end INP+ is involved in projects to map the extent of

human rights violations - both institutional violations and personal

violations. Documenting the extent of fear and discrimination that

PLWHA face is necessary in order to confront the community with its attitudes in

order to force change.

McGee

National Coordinator

Indian Network for People living with HIV/AIDS (INP+)

Chennai

India

E-Mail:inpplus@...

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