Zero Discrimination Day 2014: Ending the epidemic of discrimination against PLHIV in India

Children living with HIV have the same right of education as others. (Photo by Prashant Panjiar for India HIV/AIDS Alliance)

Children living with HIV have the same right of education as others. (Photo by Prashant Panjiar for India HIV/AIDS Alliance)

March 1 is Zero Discrimination Day. HIV-related discrimination continues to plague the lives of people living with HIV (PLHIV). They are treated in dehumanizing ways, face barriers in accessing basic services like healthcare and education, and are often victims of violence and other forms of discrimination and marginalization.

Take the case of 13-year-old Prashant (name changed), from Kathua district in Jammu state in India. He is HIV-positive. His school learned of his status. The teachers mocked at him, and his peers abused him. His brother, two years elder to him, was also picked on.

“It was a horrifying experience. We were treated with disgrace. School was my favourite place to spend my day. No more!” recounts Prashant.

The mother of the boys made several rounds to school authorities, all in vain. She then approached the local Care & Support Centre (CSC) established under Alliance India’s Vihaan programme with support from the Global Fund. Responding to discrimination is a central activity of every CSC. The CSCs have established Discrimination Response Team (DRT) at district level to address these challenges. DRTs provide not only psychological support to PLHIV who have faced discrimination but also advocate on their behalf in response to discrimination they have experienced. The teams inform appropriate district or government authorities about the incidents of discrimination faced by PLHIV and take appropriate steps to address the same.

In this case, the DRT promptly organized a meeting with the sarpanch (head of the village government) and discussed the issue. The DRT educated him that the behavior of the school towards the boys was wrong. Together they approached the school authorities and encouraged them to treat the boys as any other students. The authorities were convinced after several rounds of discussions and committed to be fair to the boys.

“I am happy to be back to school. Though I see a change in behavior of my teachers and peers, it will take some time for me to adjust again,” says Prashant.

Discrimination denies PLHIV their dignity and respect and leads to reduced self-confidence, loss of motivation and withdrawal from society. This discrimination has profound implications on all HIV-related services, from prevention to treatment, care and support. It reduces people’s willingness to be tested for HIV, to disclose their HIV status, to practice safer sex and to access health care. Vihaan is committed to creating a stigma and discrimination-free environment for PLHIV, and the DRTs are already proving to be effect tools to proactively respond to discrimination.

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The author of this post, Ankita Bhalla, is Communications Associate at India HIV/AIDS Alliance.

With support from the Global Fund to Fight AIDS, Tuberculosis and Malaria, Vihaan is establishing 350 Care & Support Centres across India that will help expand access to services, increase treatment adherence, reduce stigma and discrimination, and improve the quality of life of PLHIV. The centres will support PLHIV, including those from underserved and marginalized populations who have had difficulty in accessing treatment including women, children and high-risk groups in 31 states and territories.

I did the HIV test: June 1994

Fear of societal stigma and discrimination often keeps people from getting tested for HIV. (Photo by Peter Caton for India HIV/AIDS Alliance

Fear of societal stigma and discrimination often keeps people from getting tested for HIV. (Photo by Peter Caton for India HIV/AIDS Alliance)

It was one of those moments. Alone at home, I looked up the number for a diagnostic lab close by. When I got there, my heart skipped a beat to see the words: ‘HIV ELISA TEST’ jump out at me from the signboard. This was 1994, and I was scared. I wasn’t quite sure if I was ready to hear the result.

The clinic was a set of three rooms, full of grimy lab stuff, cheap plastic decor that was as depressing as it was tasteless. The secondhand magazines strewn around only added to my sense of gloom.

As I approached the counter, my head was in a spin. I thought I was running fever. Then someone asked me, “Yes, what are you here for?” I was directed to a small room where the lab technician asked me, “ELIZA for?” I answered shakily, “For HIV.” The room came to a halt. At least a couple of people turned around to stare at my face.

Here I was telling for the first time – to a bunch of strangers, amid bandages, rubbing alcohol, syringes, and pictures of smokers’ lungs and brains on drugs – that I needed an HIV test. And they were outright insulting to me. I felt humiliated.

But we needed to get back to the business at hand. Other people waited their turns too, so I extended my arm and the nurse took my blood. After a few moments, she withdrew the needle and placed my bar-coded specimen in a pass-through cabinet on the wall. It was over; I was done.

I got no counseling about what an HIV test was and what it meant to get a positive or negative result. When I went to collect my result, I was met with the same attitude of disdain. An envelope containing my result was literally thrown in my direction and that was it.

Back home, out of relief, I put on a favorite song. I did conquer my demons around HIV that day. But more importantly, I promised myself that I will never let anyone treat me the way that clinic did. It’s a promise I have kept.

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The author of this post, Shaleen Rakesh, serves as Director of Technical Support at India HIV/AIDS Alliance. He initiated the fight against Section 377 of Indian Penal Code while on staff at the Naz Foundation (India) Trust in 2001. A collection of his poems, The Lion and The Antler, was recently published.

By the Community, for the Community: India’s Own Curriculum for Vulnerable Sexual Minorities

mods2Pehchan (which in Hindi means ‘identity’ or ‘recognition’) is one of the largest programme of its kind not just in India but in the world catering to the health and development needs of men who have sex with men, male-to-female transgender and hijra (MTH) populations. The five-year programme, which began in 2010 with support from the Global Fund is implemented in 17 states by India HIV/AIDS Alliance through six regional partners – Humsafar Trust, Pehchan North Region Office, SAATHII, Sangama, SIAAP and Alliance India Andhra Pradesh. The six regional partners together support 200 community-based organizations (CBOs) of MTH people. These CBOs are at the frontline of programme implementation at the district-level.

One of the biggest programmatic exercises in the first phase of Pehchan (2010-12) was the development of a comprehensive package of thematic training modules for the CBO staff. The themes ranged from Pehchan-specific management issues to leadership and organizational development; basics of STI and HIV prevention, care, support and treatment to mental health concerns; identity-gender-sexuality to family support and issues of MTH individuals with female partners; legal and human rights to trauma and violence; positive living to life skills education. It is unlikely that such a diverse set of training modules  – 16 in all – have ever before been prepared for any marginalized community in the context of national programmes focused on HIV and associated issues of sexual and reproductive health (SRH) and rights.

The scale of development of Pehchan Training Curriculum: MSM, Transgender & Hijra Community Systems Strengthening was not only in keeping with the scale of Pehchan itself, but also in terms of the objectives of the programme. ‘Community System Strengthening’ – catchwords for the programme – is envisaged in two ambitious ways –  formation and strengthening of 200 MTH CBOs across 17 states of India; and provision of a comprehensive basket of SRH and HIV services to 453,750 MTH through these CBOs. Pehchan not only seeks to complement the National AIDS Control Programme but has also put in place a precedent for future health and development programmes for MTH or even larger LGBT populations.

The module development exercise went through three broad phases. In the first phase, experts were involved in a civil society consultation to glean inputs for each of the modules. This resulted in the development of information rich pre-modules. In the second phase, the module contents were embedded with adult-learning focused training techniques and activities through a workshop involving the master trainers who were supposed to deliver the training to CBO staff. The workshop also provided the master trainers a rehearsal on the training skills and approaches they needed to adopt for a target audience that would largely consist of first-time learners.

The modules were further streamlined in the third phase to match the programmatic priorities as well as trainee profiles and learning abilities. The third phase exercise was the most challenging as it required a team of experts and master trainers to pare down the content to make it precise, relevant, visually compelling and feasible for conveying message in a limited period of time. This phase also led to the development of the modules in manual form, which provided clear instructions to the trainers on the “how-to” of administering each module.

At a personal level I enjoyed my involvement in all stages of the module development exercise, but more so during the third phase when I led the final editing of some of the modules. The completion of work on each module provided a moment of satisfaction after weeks and months of intensive writing and re-writing. Here I must acknowledge the work done by all co-developers, topic experts, master trainers and colleagues from all partner agencies to make the modules a reality.

Of course, the exercise was far from perfect. The deployment of the training modules in the first phase of the project provided hands-on learning on the effectiveness of the modules. In the second phase of Pehchan, when cadre-based trainings have replaced theme-based trainings, the use of job aids based on the modules will provide further feedback on how the modules could be improved. However, even in their present form – as at the time of the launch – the modules are a rich repository of information and knowledge available for anyone and everyone – in India and around the world – interested in applying them in their work, or better adapting, translating, replicating and improving them!

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The author of this blog, Pawan Dhall, is a gay rights activist in India and was instrumental in drafting of the Pehchan Training Curriculum: MSM, Transgender & Hijra Community Systems Strengthening. He has been involved in queer community mobilization and development in eastern India since the early 1990s and also works with SAATHII, a non-profit that builds the capacities of individuals and agencies in the areas of sexual and reproductive health and HIV. His newest venture is Varta, which promotes dialogue on gender and sexuality as issues intimate and integral to human development in India through newspapers and other publications.

With support from the Global FundPehchan builds the capacity of 200 community-based organisations (CBOs) for men who have sex with men (MSM), transgenders and hijras in 17 states in India to be more effective partners in the government’s HIV prevention programme. By supporting the development of strong CBOs, Pehchan will address some of the capacity gaps that have often prevented CBOs from receiving government funding for much-needed HIV programming. Named Pehchan which in Hindi means ‘identity’, ‘recognition’ or ‘acknowledgement,’ this programme is implemented by India HIV/AIDS Alliance in consortium with Humsafar Trust,  PNRO,  SAATHIISangama, and SIAAP and will reach 453,750 MSM, transgenders and hijras by 2015. It is the Global Fund’s largest single-country grant to date focused on the HIV response for vulnerable sexual minorities.

“Fearless”: Improving Sexual & Reproductive Health of Female Sex Workers

Targeted Interventions allow female sex workers to access services in a more supportive and less stigmatizing environment as compared to government hospitals. (Photo by Peter Caton for India HIV/AIDS Alliance)

Targeted Interventions allow female sex workers to access services in a more supportive and less stigmatizing environment as compared to government hospitals. (Photo by Peter Caton for India HIV/AIDS Alliance)

In India, as elsewhere, female sex workers (FSW) have considerable unmet sexual & reproductive health (SRH) needs due to their occupation and social marginalization. They shy away from accessing SRH services due to stigma and discrimination, negative attitudes of healthcare providers, and fear of law enforcement agencies, clients and people opposed to sex work.

Under the country’s National AIDS Control Program (NACP), targeted interventions (TIs) for FSWs are implemented to provide access to HIV prevention services. TIs allow FSWs to access services in a more supportive and less stigmatizing environment as compared to government hospitals. Unfortunately, TIs do not include SRH services in spite of the immediate relevance of these services.

Evidence, both global and national, has shown that linking HIV and SRH services provide a valuable impetus to encourage uptake of prevention, treatment, and care and support services, especially by people living with HIV (PLHIV) and key populations, including FSWs. With this approach in mind, India HIV/AIDS Alliance with support from MAC AIDS Fund has initiated a pilot programme Abhaya – meaning ‘fearless’ in Hindi – for FSWs in Andhra Pradesh and Gujarat.

Within existing TIs for FSWs, Abhaya expands access to complementary SRH services. The project enables FSWs and their partners to reach to a broader range of services like SRH information, counselling, referral and linkages to facilities providing relevant services. Along with this, the intervention also builds the capacity of existing healthcare providers and other relevant stakeholders to ensure a responsive attitude towards FSWs. Abhaya will also engage in advocacy with the government to identify opportunities to adapt and scale-up these expanded services in a stigma-free environment as a part of the national strategy.

Abhaya gives a significant role to FSWs and their partners in the implementation of the programme at all stages to increase ownership and the potential for sustainability of the initiative. Over the pilot year, the programme will reach 3,000 FSWs, helping them to better identify their SRH needs and access quality services thus empowering them to protect their overall health and wellbeing.

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The author of this blog, Kumkum Pal, is Programme Officer: HIV & SRHR at India HIV/AIDS Alliance.

Supported by the MAC AIDS Fund, Abhaya expands access to sexual and reproductive health (SRH) services as part of HIV prevention interventions for female sex workers (FSWs) in Andhra Pradesh and Gujarat. The programme will complement the existing targeted intervention (TI) programme under the country’s National AIDS Control Program (NACP) by providing key SRH services and linkages and increase the desirability and value of the TIs for FSWs. Alliance India is implementing the programme with support from Sakhi Jyot in Gujarat and Prema Sangam Mahila Mandali in Andhra Pradesh.