Study examines socio-economic impact of HIV/AIDS on people living with HIV/AIDS and their families in India

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Among the issues highlighted at the recent XVth International AIDS Conference in Bangkok was the fact that the ability to continue working provides a vital lifeline for people living with HIV/AIDS. But maintaining a regular job is not always so easy.

A new ILO study shows that in India, people living with HIV/AIDS and their families suffer drastic income cuts. Amid rising household expenditures, families compromise on education and face mounting debts. Recognizing the challenge, the ILO is working on bold initiatives to tackle the epidemic directly at the workplace.

"Work is more than medicine to us", says Naveen Kumar a young person living with HIV/AIDS in India. "It keeps us going and enables us to bring home food and medicine… we can continue to work for years."

Naveen was a participant at a workshop organized by ILO India under the ILO project, "Prevention of HIV/AIDS in the world of work - A Tripartite response". The project, supported by the U.S Department of Labor (USDOL), aims to mobilize the ILO's tripartite partners and provide technical assistance to develop policy and programmes in the workplace.

"The ILO/USDOL project is providing people like us with a platform to reach out to trade unions, employers and government and present our concerns", Naveen adds.

The ILO project recently released a study, "Assessing the Socio-economic Impact of HIV/AIDS on People Living with HIV/AIDS (PLWHAs) and their families in India," Undertaken by networks of PLWHAs with support from the ILO across four states in India, the study points to growing economic hardships.

According to the study, household incomes of HIV/AIDS sufferers are depleted by one third, while average monthly expenditure on food and treatment increases substantially. As a result of reduced income and increased expenditure, these households have to compromise on their children's education. Nearly 38 per cent of respondents reported being forced to withdraw children from school and sending them to work.

Many HIV positive persons depend on the income from a regular job. But prevailing stigma and discrimination at the workplace complicate the matter, the study says, reporting that many PLWHA do not disclose their status to employers for fear of losing their jobs.

Manoj Pardesi of the Maharashtra Network of PLWHA praised the ILO for building their capacity to undertake the research assignment. "The ILO study has helped us sharpen the focus of our advocacy efforts to fight stigma and discrimination", he says.

The ILO project provides support to the Ministry of Labour, employers' and workers' organizations and enterprises, in order to strengthen the response to HIV/AIDS in the world of work in India. The current phase of the project has selected three states - Jharkhand, Madhya Pradesh and West Bengal in which to focus activities.

Based on rapid assessment surveys and consultations with the stakeholders, the project has reached agreement with 55 companies to launch enterprise-level interventions covering more than 100,000 workers. "The whole idea is to institutionalize HIV/AIDS interventions within the company to ensure sustainability", says S. Mohammed Afsar, the National Project Coordinator.

Trade unions are taking concerted action to include HIV/AIDS in their programmes. According to R.A. Milttal, Secretary of the Hind Mazdoor Sabha union, "trade unions have understood that HIV/AIDS is affecting workers badly, and that it is the responsibility of trade unions to protect workers". The union has recently set up a Task Force to develop a policy and programme for unions on HIV/AIDS. The ILO and the National Labour Institute (NLI) have developed a training manual for trade unions and conducted training programmes for trade unionists and government officials.

As part of efforts to mainstream HIV/AIDS in the Ministry of Labour, the ILO is also collaborating with NLI and the Central Board for Workers Education (CBWE). A specific training manual has been developed to assist CBWE officers to conduct training courses and to integrate HIV/AIDS within the workers' education programme. In 2003, this programme provided training to a total of 210,028 workers - of which 89,819 were men and 120,209 women.

Raising awareness about HIV/AIDS is a vital component in tackling the epidemic. The ILO project has produced an advocacy and training package for use by employers and trade unions. Simultaneously, it is working to promote the principles contained in the ILO Code of practice on HIV/AIDS and the world of work.

As a result of these efforts, the Indian Government's National AIDS Control Organization (NACO) has endorsed the ILO Code of Practice for use in workplace interventions throughout India. Films and posters have been produced for enterprises and trade unions, and the ILO has collaborated with the Indian Network for People Living With HIV/AIDS (PLWHA) and NLI to organize national level workshop to reduce HIV-related stigma and discrimination in the world of work. In addition, the ILO organized a consultation on draft legislation on HIV/AIDS with the social partners and the Lawyers Collective in December 2003.

According to Herman van der Laan, Director of the ILO Subregional Office for South Asia, "The world of work can play a key role in ensuring that the rights of PLWHA related to employment, non-discrimination, treatment and social security are respected. While access to affordable treatment is indeed a key issue, perhaps an equally important, if not greater need is to provide access to regular income... Another issue causing concern is the reduced expenditure on children's education in PLWHA families, and the need for children to take up jobs to complement existing family incomes… HIV may be exacerbating child labour in India as observed in several worst affected countries".

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