Jamra primary scholl for children affected by HIV/AIDS, drugs or poverty, Senegal (c) Nell Freeman/Alliance Participants in the Photovioce project, Ecuador © Marcela Nievas for the Alliance
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People Living with HIV Stigma Index in Ecuador


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The ‘People Living with HIV Stigma Index’ is designed to increase understanding of how HIV-related stigma and discrimination is experienced.

The Index being carried out in Ecuador is part of a global initiative driven by IPPF (International Planned Parenthood Federation), GNP+ (Global Network of People living with HIV/AIDS), ICW (The International Community of Women with HIV/AIDS), and UNAIDS.


The initiative views the process as just as important as the product. In Ecuador a group of 16 people living with HIV (PLHIV) were selected and trained to conduct the 500 voluntary and confidential questionnaires.

The questionnaire explores areas relating to the social environment, family, work, access to health services, knowledge of their rights, HIV testing and treatment of HIV, having children, internal stigma, and additional questions.    

As both interviewers and interviewees, and drivers of how the information is collected, analysed and used, PLHIV are at the centre of the process, empowering both the individuals and communities most affected by the epidemic. This is in line with the GIPA principle (Greater Involvement of People living with HIV). 


In Ecuador, the technical advisory committee set up to oversee implementation of the Index, is led by the Ecuadorian Coalition of PLHIV (CEPVVS), an organisation supported by the Alliance through linking organisation Corporacion Kimirina.

Knowledge and support has also been sought from staff in the HIV and AIDS clinics of eight cities in the country, around 100 people, all of whom have received training on stigma and discrimination towards PLHIV.  

The committee will ensure results of the study are suitable to be used at local, national and international level and influence public polices and interventions to tackle stigma and discrimination.

The committee includes representatives from CEPVVS, Corporacion Kimirna, UNAIDS, UNFPA, the Ecuadorian Ministry of Health’s National AIDS Programme (PNS-MSP) and the Senior Polytechnic School of Chimborazo (ESPOCH).  

Santiago Jaramillo, general secretary of CEPVVS, reported from the evaluation workshop held in April saying: “The CEPVVS and ESPOCH teams were able to share their experiences.  It was an extraordinary experience, full of commitment, solidarity and professionalism in the work carried out.  

The conclusions of this workshop will be published along with the final results of the research, which are currently being reviewed.”  


Better information on the stigma and discrimination against PLHIV enables better responses to the HIV epidemic.  Evidence gained can be used to shape future interventions and policy change, locally, nationally and internationally.

The use of the Index over time can also be instrumental in increasing collective understanding and detecting changes and trends.

In Ecuador

The Index can serve as a catalyst for fostering change in the communities in which it is used. In Ecuador, implementation of the Stigma Index has had the effect of empowering and strengthening the Ecuadorian Coalition of PLHIV and its local partners.

Through the interviews, the organisation has been able to reach more PLHIV who have joined in the work of the Coalition and wanted to find out about related issues concerning their rights and HIV and AIDS.

It is expected the research will contribute to reducing the gap in availability of adequate, timely, accurate information on HIV in Ecuador. Only with adequate information on the epidemic and its characteristics can we learn to act efficiently in the struggle against the HIV epidemic and reduce the impact of stigma and discrimination on the affected population.  

We will make the report available through the website when it is published.