International Human Rights Day 2013: Reflections on Rights Situation of PLHIV and Key Populations in India

HRD_blogSince the United Nations adopted the Universal Declaration of Human Rights in 1948, there has been a slow but steady expansion of international agreements that promote and protect the rights and dignity of all people everywhere. But even today, people living with HIV (PLHIV) and members of key population groups, such as men who have sex with men, transgenders, hijras, people who inject drugs and sex workers, continue to face violations to their basic rights. They are denied recognition in society, face barriers in accessing basic services like healthcare and education, and are often victims of violence and other forms of discrimination and marginalization.

Protection and fulfilment of the human rights of vulnerable communities are at the core of India HIV/AIDS Alliance’s work. Although the full enjoyment of their rights remains a dream for too many people, there are stories of hope and courage. This Human Rights Day take a look at some of the challenges facing India and how we’re responding:

The Other Epidemic: Gender-based Violence in India

Gender-based violence is an epidemic facing India and the world, and like AIDS, it will require a sustained and committed effort to overcome. Attitudes must change. We must never tolerate violence against women and girls. We must never be blind to gender’s diversity. Read more.

Fighting for the Right to Health for Women Living with HIV: A Success in Gujarat

Stigma and discrimination remain among the primary barriers to achieving universal access to HIV treatment, care, and prevention. As HIV treatment programmes become increasingly available, access to these lifesaving services depends on the degree to which all health facilities welcome PLHIV and respect their rights. Read more.

Confronting Quackery, Demanding Care: India’s Hijras Seek Access to Sex Reassignment Surgery Services

India’s hijra community routinely experiences mistreatment at the hands of doctors and the health system. Progress is slow and often only as a result of significant advocacy by community organisations. Hijras and transgenders have the same right to health as any other citizen, and the government must act to protect their lives. Read more.

Confidentiality: A Health and Human Rights Issue for PLHIV

There is nothing more angering than the thought of stigma faced by people living with HIV (PLHIV). Take, for example, the situation where numerous PLHIV had their HIV status published on the front page of their medical history records, making confidential information available to anyone who glanced at their files. Read more.  

The Pain of Being ‘the Other’: How Stigma Fuels HIV/AIDS among People Who Inject Drugs in India

The vulnerability of people who inject drugs (PWID) is further fuelled by the fact that society perceives drug users as criminals and a threat to society. This makes it difficult for people who want to reach out to them to build rapport and trust. This demonization further fuels the HIV epidemic in the country. Read more.

Shedding Light on Abuse: Alliance India study shows that almost 50% of women who inject drugs in Manipur report harassment and abuse from community members

A study conducted by Alliance India sheds light on the extent of the social discrimination and isolation experienced by women who inject drugs in Manipur. The lack of a support system in the lives of women who inject drugs significantly increases their isolation and likelihood of engaging in sex work as a means of earning a living. Read more.

A Beacon of Hope in the Fight Against Child Marriage: One Girl’s Story

The issue of child marriage is a very common problem in Allahabad in the conservative Indian state of Uttar Pradesh. Here, girls are married early and are expected to bear children soon after.  Issues such as contraception, sexually transmitted infections, and reproductive rights of young people are met with a wall of silence. Read more.

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International Youth Day 2013: Putting Youth Living with HIV in the Mix

With information and support from Alliance India's Action Project, youth have gained capacity and confidence to advocate for improved sexual and reproductive health policies and services for their peers. (Photo by Prashant Panjiar for India HIV/AIDS Alliance)

With information and support from Alliance India’s Action Project, youth have gained capacity and confidence to advocate for improved sexual and reproductive health policies and services for their peers. (Photo by Prashant Panjiar for India HIV/AIDS Alliance)

Fifty percent of India’s population is below 25 years of age. As they mature sexually, adolescents—especially those from high-risk groups—face vulnerability to HIV and experience a range of unmet sexual & reproductive health (SRH) needs. The SRH needs of too many of India’s adolescents continue to be underserved. Sexuality education in schools is limited, and social norms typically silence discussions of adolescent sexuality and act as barriers to creating responsive services. As adolescents become sexually active, they have limited access to the information and services they need. Adolescents show low levels of knowledge about puberty, menstruation, contraception, safer sex and sexually transmitted infections (STIs), including HIV.

According to an Alliance India study conducted by our CHAHA programme with 72 girls and boys living with HIV and 95 girls and boys affected by HIV (aged 12-18 years), the support needed by these groups was intense, particularly among those who had lost one or both parents to HIV and whose remaining family members struggled to provide the needed level of ongoing support and supervision. In cases of orphaned adolescents, distant relationships with caregivers resulted in reluctance among adolescents to discuss issues and concerns about SRH openly and made them feel more isolated and lonely.

Moreover, the HIV status of adolescents themselves also influenced their level of engagement with their peers and the community. In the same study, adolescent girls living with HIV in Andhra Pradesh appeared to be isolating themselves from their peers due to self-stigma and feared discrimination, which seemed to be more common among girls than boys. As with older girls living with HIV, they appeared to be spending most of their time home alone since many lived in widow-headed households in which their mothers worked all day and were less available for support and conversation.

Boys living with HIV reported being teased by their peers for their stunted growth, delayed development and sexual inactivity often related to HIV status. Many of the adolescent boys living with HIV explained that they did not want to engage in any sexual relationships because they were afraid of ‘spoiling other people’s lives with HIV.’

For young people living with HIV, concerns about physical development, sexuality and reproduction, including getting married and having children, are immediate and profound. They feel pressure to control their desires and limit their aspirations because they are living with HIV. Little effort has been made to give them guidance on their choices, and youth-friendly counseling services are rarely if ever available to them.

Under our European Union-supported Action Project, Alliance India made some progress in efforts to empower youth, including those living with HIV, by educating them about SRH issues that are important to them—contraception, HIV prevention and care, STIs, hygiene, and pregnancy—and by discussing subjects that no one had ever talked to them about before. With this support, youth grew confident to advocate through the Youth Partnership Platforms formed under the project to encourage government to enact policies and offer services that respond more effectively to the SRH needs of young people like themselves.

There is a long journey ahead. This International Youth Day, let’s commit to shaping SRH services and policies that recognize the distinct challenges youth face, that reflect their diversity (including issues around gender identity and same-sex desire), and that address the stigma and discrimination that poisons the lives of adolescents living with HIV.

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The author of this post, Sonal Mehta, is Director: Policy and Programme of India HIV/AIDS Alliance in New Delhi.

The Action Project (2010-13) was funded by the European Union and strengthened and empowered civil society organisations and youth groups to advocate for more responsive policies addressing the sexual and reproductive health and rights (SRHR) of young people. The project focused on the most marginalised young people—MSM and transgender community members, drug users, sex workers and those living with HIV. The project was implemented in partnership with MAMTA and SASO in India and by HASAB in Bangladesh. Over its life, the Action Project contributed to shaping SRHR policies and their implementation in India and Bangladesh by supporting the meaningful participation of young people in relevant processes and programmes.

Creating Change One Peer Group at a Time

An Action Project peer group leader (centre) meets with her youth group members. These meetings offer a space for group members to share any SRHR related concerns they may have about issues like child marriage, HIV, safe sex and family planning.

The Action Project empowers youth by educating them about issues that are important to them and discussing subjects that no one has talked to them about before. In conservative areas such as Allahabad where speaking about sexual, reproductive or health rights (SRHR) is considered taboo, discussing these issues openly, especially by youth, is a concept that took a while to be accepted. However, the difficulty or novelty of this situation did not prevent youth from working as peer leaders with the Action Project in order to pass on information about contraception, HIV prevention and care, STIs, hygiene, pregnancy or nutrition to other youth in their village.

Peer leaders are integral to the work that the Action Project does. The project’s partner NGOs in Allahabad and Manipur train youth peer leaders on how to create groups that they go on to mentor, and teaches them how to lobby for district and state-wide policy changes on issues related to youth and sexual reproductive health.

Savera (name changed), a 20-year-old peer leader, says, ”I was completely unaware about hygiene and nutrition during menstruation, safe sex, condom use or consensual sex. I also learned so much about HIV prevention and care here.” Remembering when she first started working as a peer leader, she recalls, “the village people used to call me ‘characterless’ because I spoke openly about sexual reproductive rights which was something ‘nice, conservative girls’ aren’t allowed to talk about. Now, however, my uncles and other village elders ask me to get their daughters involved in the project.”

And more and more girls are doing just that. Another peer leader who joined the Action Project, Divya (name changed) found the information she received from the Action Project to be helpful on a very personal level. The 19-year-old explains, “I met this boy in college three years ago and we began to like each other and he asked me to have sex with him. After everything I had learnt from this project, I knew that I didn’t want to have sex with him and I had the right to say ‘No’, and so I refused. I’m happy that I had the right information and was able to protect myself from potentially ruining my life.”

It is important to note that having the right information isn’t enough if it isn’t coupled with the confidence to share the information or to quest for more information. While speaking about her exposure to health camps and information sharing meetings with doctors, Savera said, “I would never have dreamed of speaking to a doctor even about my own health problems. Now I can openly ask doctors questions about HIV and other issues and I can see how amazed they are that I, being a village girl, am able to confidently ask these things.” Kavita added, “I used to be ashamed when they taught us about SRHR but now there is no shame and our perspectives have changed. Now I feel confident and at ease sharing information about SRHR.”

With the right type of support and access to information, the Action Project is building the capacity of these young leaders and offering them a sense of confidence they never had before, while also empowering them to change the social landscape of their villages one peer group at a time.

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The Action Project is funded by the European Commission and endeavours to strengthen and empower civil society organisations and youth groups to advocate for more responsive policies addressing the sexual and reproductive health and rights (SRHR) of young people. The project focuses on the most marginalised young people—MSM and transgender community members, drug users, sex workers and those living with HIV. The project is being implemented in partnership with MAMTA and SASO in India and by HASAB in Bangladesh.  By 2013, the Action project will have contributed to shaping SRHR policies and their implementation in India and Bangladesh by supporting the meaningful participation of young people in relevant processes and programmes.

Is the Commonwealth ready for an AIDS-free generation?

Prasada Rao presents on the recently published report of the Global Commission on HIV and the Law at the International AIDS Conference in July 2012.

J.V.R. Prasada Rao blogs in New Statesman (London) about the importance of law reform in successfully addressing HIV/AIDS and how the Commonwealth can lead by example and take decisive actions to address the legal and structural barriers currently impeding the global HIV response:

Last week the European Parliament agreed on a new law to provide specific assistance and protection to people who suffer crime because of their sexual orientation, gender identity or, in a first for EU law, gender expression.

Can we expect the Commonwealth to adopt such a progressive approach on HIV and human rights issues? The annual meeting of the Commonwealth Foreign Ministers, coming up soon in New York, normally attracts attention for its economic and political agenda. But among the HIV/AIDS community, populations vulnerable to the infection and human rights activists, concern is centered on the fate of certain recommendations relating to the Commonwealth’s legal reform process….

To read the complete article, please click here.

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Prasada Rao is in the UN Secretary General’s Special Envoy on AIDS in the Asia Pacific region. He is former Director General of India’s National AIDS Control Organisation (NACO) and former Regional Director of UNAIDS in Asia and the Pacific. He served as a member of the Global Commission on HIV and the Law and is a trustee of both the International HIV/AIDS Alliance and India HIV/AIDS Alliance.

The power of youth participation: Secures essential vitamin supplements for unmarried, adolescent girls.

A youth group leader engages with members of the village council.
(Photograph © Prashant Panjiar for India HIV/AIDS Alliance)

In Bahadur Block of Allahabad in the state of Uttar Pradesh, young people have ensured the access to iron and folic acid supplements for adolescent girls in their locality. Iron and folic acid deficiency is common in similar locations since residents in these areas receive inadequate nutrition, which can lead to anemia and symptoms such as fatigue.

This marks a novel move for Bahadur Block since these supplements were earlier provided only to pregnant women, and a significant move for the youth groups in this area which continue to play a powerful role in village level health programmes. This particular youth group frequently attended Gram Sabha, or village council, level meetings which emphasises the importance that the village elders in Bahadur Block place on the opinions of youth group members. It was during one such meeting when youth group members had expressed the need to disseminate these essential supplements to young girls in their village, to which the village leaders agreed.

Youth group members feel proud of the important role they have been playing in the development of their villages. Group members have created a change in the awareness levels of villagers at a scale that few believed was possible in such a short amount of time.
(Photograph © Prashant Panjiar for India HIV/AIDS Alliance)

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The Action Project is funded by the European Commission and endeavours to strengthen and empower civil society organisations and youth groups to advocate for more responsive policies addressing the sexual and reproductive health and rights (SRHR) of young people. The project focuses on the most marginalised young people—MSM and transgender community members, drug users, sex workers and those living with HIV. The project is being implemented in partnership with MAMTA and SASO in India and by HASAB in Bangladesh.  By 2013, the Action Project will have contributed to shaping SRHR policies and their implementation in India and Bangladesh by supporting the meaningful participation of young people in relevant processes and programmes.

How Integration Responds to the SRHR Needs of PLHIV

People living with HIV (PLHIV) have the same sexual and reproductive rights as anyone else – such as the right to choose who to have sex with and to have sexual relations free from violence. They also share many of the same needs for sexual and reproductive health and rights (SRHR) information, support, commodities and services – such as advice about family planning.

However, due to many factors, PLHIV often experience greater vulnerability to SRH related ill health than other community members. They may experience  specific or more complex SRHR needs; additional or stronger barriers to accessing SRHR services; and weaker capacity or opportunities to demand SRHR services. These factors are further affected – sometimes complicated – by the differences between individual PLHIV, such as in terms of their gender, age, legal status and whether they use drugs or are involved in sex work.

As a result, PLHIV often have significant unmet needs for SRHR. These can ‘fall through the net’ of both: HIV services (often designed to address specific risk behaviors rather than the ‘whole person’); and SRHR services (often designed for the general public and focused on mainstream services, such as family planning).

This brief specifically focuses on the importance, but also challenges, of HIV/SRHR integration for people living with HIV (PLHIV). It is based on the experiences of a growing number of groups working with such communities to put integration into practice in a range of setting. These groups include MAMTA and the India HIV/AIDS Alliance in India; TASO in Uganda; RHAC in Cambodia; and POZ in Haiti. The work of these groups offers important insights into ‘what works’. But they also highlight that everyone is still learning and questions remain about what constitutes good practice.

The issue brief promotes integration as a desirable goal in the long-term. However, it also emphasizes that organizations must work in a way and at pace that is appropriate and feasible for them – to ensure that the joining of HIV and SRHR services and systems enhances, rather than compromises, support for PLHIV.

This review was commissioned by the India HIV/AIDS Alliance with support from the European Union under the Action Project and explores experiences and lessons from around the world including Asia and the Pacific. This issue brief is part of a series of materials resulting from a review of good practice in the integration of HIV and sexual and reproductive health and rights for key populations.

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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 Commison 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.

Silent No More: Empowering Young People to Speak Out about Sexual & Reproductive Health and Rights

A youth group leader (left) in Allahabad speaks to members of her group.

When the Action Project first started working in Uttar Pradesh and Manipur, the shyness displayed by young people when speaking about subjects considered taboo—including their sexual & reproductive health and rights (SRHR)—were obvious to the Action Project team. This proved to be a dilemma since vocal and outspoken discussions regarding these issues was exactly what the project’s team members wanted these young people to participate in.

Given that child marriages were a common occurrence, following which young girls were pressured to start having children, discussing issues such as family planning, contraception or HIV prevention was critical to reversing this trend.  The Action Project slowly started discussing issues related to SRHR with young people and soon saw a gradual change in their understanding of and confidence in speaking out about these subjects.

Now, Action Project members say that there is a stark difference in the confidence levels of youth members as compared to when the project was first initiated. Young people are now more able and willing to discuss topics related to their SRHR and have increased knowledge on prevention, HIV, safer sex and condom use, and are better prepared to access health services.  Peer leaders report mentoring other youth group members who have felt pressured to get married early or to have sex by their partners.

Additionally, the new found confidence and respect experienced by youth group members have allowed them to raise their concerns with the pradhan (village council leader) and other village government officials who have started to pay attention and have responded to their suggestions on village development. Female youth group members have also reported a reduction in their experience of gender discrimination. Young peer leaders in Uttar Pradesh have even been selected by a radio programme sponsored by the Directorate of Information and Broadcasting to talk about SRHR on the show. These are changes that youth group members have catalyzed through their engagement with the Action Project. Silent no more, they now speak up and make their claim for a better tomorrow in their communities.

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The Action Project is funded by the European Commission and endeavours to strengthen and empower civil society organisations and youth groups to advocate for more responsive policies addressing the sexual and reproductive health and rights (SRHR) of young people. The project focuses on the most marginalised young people—MSM and transgender community members, drug users, sex workers and those living with HIV. The project is being implemented in partnership with MAMTA and SASO in India and by HASAB in Bangladesh.  By 2013, the Action Project will have contributed to shaping SRHR policies and their implementation in India and Bangladesh by supporting the meaningful participation of young people in relevant processes and programmes.