HIV and AIDS community-led project, Andhra Pradesh

1. Background

Andhra Pradesh is one of six Indian states with a high prevalence of people with HIV/AIDS.  Based on sentinel surveillance data, National AIDS Control Organisation (NACO) estimates that there are 500,000 infections in Andhra Pradesh.  Although HIV/AIDS is still largely concentrated in high risk groups -- commercial sex workers, injecting drug users and truck drivers, data suggests that in some regions, the epidemic is moving beyond these groups into the general population and from urban to rural districts. The project area (Jaggiahpeta), covers 27 villages and one town, with a population of 107,000, where there are 795 people infected with HIV/AIDS who directly benefit from the project.

The project area and beneficiaries

Four highways pass through Jaggiahpeta and there are 6 factories, which employ people from various parts of the country.  The transient population and high levels of migration and mobility mean there is a high vulnerability to HIV infection.  Many women from poor communities engage in clandestine sex work to survive.  A large number of the people in the area are infected and are in deteriorating health, worsened by poverty but their particular needs are beyond the scope of state health systems.

HIV/AIDS- learning to cope with a chronic condition

In India, many people are only diagnosed with HIV when they have already begun to develop symptoms and are weak and physically unwell.  The implications of the diagnosis can be overwhelming -- there are so many things to contend with and take in: how to stay well, the need to pay careful attention to health, diet and overall lifestyle and taking medication regularly and correctly.  Many feel grief at the loss of good health and the possible loss of family members.  Coping with negative attitudes and censure in the community can be very difficult.  There is the added strain of finding financial support and advice, all the more difficult if you are living in poverty and if you are a woman.

Social isolation and stigma

The stigma attached to the transmission of HIV is a further complication. In India, AIDS is perceived as a disease of ‘other people’, whose lifestyles are considered ‘perverted’ and ’sinful’.  This drives many families to protect themselves and their children from maltreatment by isolating themselves from their extended family and communities.  This cuts them off from valuable supports and puts them at risk of depression and anxiety, drug or alcohol abuse, failure at school and inability to maintain a job.

Improving care and social acceptance

Policies and models of good practice are not being implemented because of discrimination and people living with HIV/AIDS have to put up with poor care and inadequate services.  LEPRA is working to improve the understanding of the general public and promote acceptance of infected people.  Other projects in Andhra Pradesh have shown the potential of PLHA and their families to advocate for services as a group.

2. Aims

The primary aims of the Sreyassu project are to:-

• Protect and promote the rights of people living with HIV/AIDS
• Offer quality treatment for opportunistic infections and provide community-based care
• Provide educational sponsorship to children whose parents are affected by HIV/AIDS and maintenance support to children orphaned by AIDS and placed in foster families
• Raise awareness of treatment and develop rehabilitation plans
• Provide an environment in which people can confidently express their worries, anxieties and issues with their peers
• Co-ordinate closely with; voluntary counselling and testing centres; prevention of parent to child transmission centres; welfare and development departments.

Activities

Weekly clinics are held to register new patients, treat patients for opportunistic infections and refer suspected cases of TB to microscopy centres for testing.

Medical -- Antiretroviral treatment (ART)

A person’s CD4 count measures the efficiency of their immune system.  The fewer functioning CD4 cells in their blood, the weaker the immune system and the more vulnerable a person is to infections and illnesses.

The Project refers people to ART centres for testing. ART treatment prevents the HIV virus from replicating and is a vital tool for a person’s survival.  The drugs are strong, can have severe side-effects and have to be taken consistently to be effective and to avoid the development of drug resistance.  Explaining carefully why this is important is key to the success of the programme, especially with pregnant women.

Opportunistic infections

People with advanced HIV infection are vulnerable to infections and malignancies, called ‘opportunistic infections’ because they take advantage of a weakened immune system.  These can be urinary tract and skin infections, dysentery, candiasis, TB, pneumonia, septicaemia, fever, toxoplasmosis, herpes, Karposi’s sarcoma and lymphoma, respiratory tract infections and joint pains.

Nutrition

Eating a healthy nutritious diet helps the immune system to function and increase the life span of people living with HIV/AIDS but this is difficult if you can only afford one meal a day.  Sreyassu provides people with free nutritional supplements on a monthly basis.  This nutritional support is designed to help patients gain weight and reduce their susceptibility to opportunistic infections.  The nutrition and food unit organises education sessions to raise awareness of the importance of supporting the immune system through diet and also organises regular demonstrations of low-cost, nutritional recipes.

Counselling and living positively

Counselling is an integral part of a successful care programme because people who receive counselling on positive living usually adhere better to treatment.  The goal of counselling is to help the client live positively and improve his or her quality of life.  Sessions are held with individuals, discordant couples and groups and with patients’ families.  They are given counselling to help them understand what care and precautions are needed in their sex lives; to increase their knowledge of; opportunistic infections; directly observed treatment, short-course, (DOTS) in TB, as well as the above-mentioned ART and nutrition.

Village-based support groups

These groups were originally set up as part of a national programme to promote rural development and are ready made forums for women, helping women take up income generating schemes.  Support groups are used by projects working to reduce poverty to empower women – about their rights, information about what is available, how to go about getting it, as well as health specific information eg reproductive health. Women can join and access funding to carry out small projects. Sreyassu uses these meetings as a opportunity for peer to peer counselling and as a platform to reduce stigma and discrimination about HIV/AIDS in the communities.

Outreach services

Outreach workers identify new cases and help the community to understand the dynamics of HIV/AIDS.  They monitor the progress of beneficiaries and in particular, regularly track and follow up their adherence to ART.

Preventing parent to child transmission

Pregnant mothers are referred to Independent counselling and testing centres to be given Nevirapine, to prevent transmitting HIV to their babies during delivery.

Educational support to orphaned children

Sreyassu supports 100 children living or affected by HIV/AIDS, who would not otherwise attend school.  We provide educational materials, such as text books, note books, bags, school uniform and school fees. Maintenance support is also given to 19 foster children.

Livelihood programmes

The families of people living with HIV/AIDS live below the Indian poverty line and most of the women are widows.  After their husband dies, they cannot find a good livelihood to support their families.  Hard physical labour is often out of the question as they have been weakened by opportunistic infections.  Livelihood training is provided, such as sewing and computers.  People are linked to welfare departments to obtain widow’s pensions, ration cards and housing loans.

A HIV diagnosis can be a time of psychological and physical upheaval and its affects go beyond the person – its consequences will affect their children and their families, economically and socially.  Improving the health of people living with HIV/AIDS in the ways mentioned below will ultimately slow down and minimise the number of times they become ill and also prolong their lives.  Children are always vulnerable in times of family crisis and LEPRA has stepped in to support the children in the project area, who are affected by HIV/AIDS in the family.

3. Quantitative Project outcomes

• Maintain a 90% client adherence to anti retroviral therapy
• Identify at least 100 new people living with HIV/AIDS
• Increase CD4 count of people on ART from an average of 100 to 200
• Reduce the frequency of opportunistic infections
• Increase body weight by an average of 3 to 4 kilos, reduce skin disorders and increase well-being
• Train the 88 members of Sreyassu to obtain donations and resources from local philanthropists
• Refer and link people to services for TB, care, support and welfare
• Strengthen and build the capacity of Sreyassu as a community-based organisation

4. Monitoring the work of Sreyassu

We will know that we have achieved these results through analysis of data generated through the project and through focus group discussions with beneficiaries.  Funders of the Sreyassu project will receive six-monthly and annual reports.

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