Listening to the voices of communities to get to the heart of change

Structured community consultations by Koshish (Programme of Alliance India) have led to the formation of state level advocacy coalitions in Gujarat, Maharashtra, Tamil Nadu and Andhra Pradesh.
(Photo © Prashant Panjiar for India HIV/AIDS Alliance)

The social challenges in understanding and promoting the sexual reproductive health and rights (SRHR) of people living with HIV (PLHIV) are numerous. These include the social stigma and discrimination against PLHIV, limited accessibility to and availability of essential SRHR services, and the lack of a comprehensive approach to the SRHR needs of PLHIV. Bringing these issues to the attention of concerned stakeholders requires concerted advocacy efforts both at the community level and at a larger, more visible scale.

Leading this wave of change is Parivartaan, a Maharashtra based state level advocacy coalition consisting of 20 civil society organisations (CSOs). Parivartaan advocates for improved sexual reproductive health programmes and policies for PLHIV and key populations, as an initiative under the Koshish project.

Parivartaan’s state level advocacy agenda reflects priorities identified by the community. In the first year of the project, Parivartaan held community consultations in five implementing districts of Maharashtra and consulted PLHIV and key population members to identify their unmet sexual reproductive health needs. These essential consultations revealed a range of very common but highly impactful issues.

Most common among these issues was the inaccessibility to maternal health care services available at primary health centres. This  can prove to be life threatening especially when pregnant women living with HIV (WLHIV) are referred to civil hospitals for delivery. The distance and cost of the services, compounded by other factors such as stigma from medical service providers, non-availabilty of medicines and a lack of skilled medical doctors, increases their inaccessibility to necessary maternal services which, in turn, increases the likelihood of maternal death.

Parivartaan’s consultations also shed light on another area – the vulnerability of WLHIV to cervical cancer. Since pap smear tests are not available at primary health centres, the cancer can go undetected in WLHIV.

Parivartaan will continue to advocate for change so that every pregnant WLHIV can undergo a C-section delivery at her primary health centre and all WLHIV registered in ART centres can avail of the pap smear test facility.

Through its committed work with key populations, Parivartaan promotes Koshish’s belief that empowerment and partnership form core elements of effective advocacy. Koshish depends on mechanisms like feedback and community consultations with diverse district based community organizations to form the foundation of all its initiatives. Following that principle, Parivartaan’s work ensures that the voices of community members and the reailities that they experience everyday lie at the heart of its state level advocacy agenda.

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The author of this post, Kumkum Pal, is Programme Officer for Alliance India’s Koshish Programme.

Alliance India works closely with PLHIV in India through its Koshish project which aims to strengthened civil society organizations and networks that represent and work with PLHIV and other marginalized groups, such as MSM, transgenders, sex workers and IDUs, to effectively advocate for policies to improve the sexual and reproductive health and rights of PLHIV in India. This project is funded by the European Commission and is implemented in partnership with MAMTA, PWDS, VMM and CHETNA, along with state-level networks for PLHIV in Maharashtra, Tamil Nadu, Andhra Pradesh and Gujarat.

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