Greater Involvement of People living with HIV/AIDS ( GIPA )

[Guest guest]

Greater Involvement of People living with HIV/AIDS ( GIPA )

The laws, policies and ethical norms within a within India have the

potential to influence profoundly the spread of HIV/AIDS, the vulnerability

of people to the disease, and the rights of those who contract it. Through

determining their degree of empowerment the legal and ethical environment

affects people's capability to access the information, make the decisions

and access the resources necessary to protect themselves from HIV/AIDS, and

from stigma and discrimination.

The laws that exist and how they are implemented have an important impact

on how the epidemic is experienced in our country. The legal and ethical

situation has increased people's vulnerability to the disease and has

denied rights to those infected or affected. It has also adversely affected

their access to treatment and care. Initial conclusions from multi-country

studies in India under the earlier regional programmes of many Bilateral

studies indicated (which we know is quite conclusive) that the rights of

people living with HIV/AIDS (PLWHA) are routinely denied throughout the

region, and that children , women and other marginalised groups are

especially disadvantaged and made further vulnerable by a number of current

laws and policies. The Government of India and Civil Society need to review

these findings and expand the analysis towards the development of legal

frameworks and ethical principles that support an enabling environment for

the prevention of HIV/AIDS and meet the needs of those who are infected and

affected.

Global experience of the epidemic has shown that the success of HIV

prevention and care and support initiatives depends on the meaningful

participation of those infected and affected by the virus. This

necessitates that the environment of discrimination, denial and stigma must

change and HIV positive people must be actively involved in policy

formulation and implementation. Principles of GIPA (Greater Involvement of

People living with HIV and AIDS) were adopted by governments at the Paris

AIDS Summit in 1994. India is a signatory to this document.The document

included: strengthening the capacity of and coordination of networks of

PLWHA; involving PLWHA fully in decision making, formulation and

implementation of public policies; and strengthening national and

international mechanisms connected to human rights and ethics related to

HIV/AIDS. The recognition of these 'GIPA' principles was seen as a

breakthrough for good governance and the foundation of a rights-based

approach in the fight against the HIV/AIDS epidemic.

Progress in implementing the GIPA principles has been slow in India, a

little that is there on paper seems to border on a sense of tokenism. In

India like in many other developing countries, the epidemic has been

characterised by fear and ignorance, stigma and discrimination and an

absence of a planed integrated system of care and support services. People

often do not go for testing or are unwilling to admit their HIV positive

status due to the blame and shame attached to the disease. For many HIV

positive people discrimination in terms of employment, housing, access to

health care and rejection by families and communities are daily realities.

It has therefore been difficult for PLWHA to form strong organisations with

the capacity to be fully involved in responses to the epidemic at all

levels. It has also resulted in many positive networks mushrooming all

over especially in urban settings , but these networks do not seem to

represent the positive community at large. The strength of the conviction

of the principals of GIPA get diluted in these networks due to lack of

numbers in terms of active members and constant in fighting (lack of

tangible and constructive support and poor resources also leads to a matter

of survival) due to lack of support and direction from various policy

makers at all levels. As a consequence the epidemic continues to be

invisible and responses are formed without the benefit of the knowledge and

understanding of those infected and affected by the HIV epidemic.

Implementing the GIPA principles into meaningful community involvement and

participation is a priority that cannot be debated any longer, It is only

then we will be able to build on earlier analysis and pilot projects and

work together with HIV positive people and other partners on capacity

development initiatives, documentation and sharing of good practices and

the development of tools and mechanisms to monitor stigma and

discrimination It is now also evident that there is also a need to look at

ways of effectively addressing the same.

Ashok Rau

Executive Trustee/ Director

The Freedom Foundation-India

Bangalore, Bellary, Siruguppa, Mangalore, Udipi, & Hyderabad

E-mail: freedom@...

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