Out of the Shadows: Women who Use Drugs in India

AIDS2014 _FB_Postcard_CK memeWomen who use drugs are collectively failed by India’s HIV response! This systemic neglect involves government departments, civil society and the private sector. While government programs have done well to address issues of women’s empowerment and increase their access to education, health and social entitlements more broadly, there are virtually no initiatives that address the various specific needs of women who use drugs.

Out of the 120 hospital-based de-addiction centres run by the Government of India’s Department of Health and Family Welfare and over 400 NGO-run centres through the Ministry of Social Justice and Empowerment, none are focused on issues of women, and most have little experience in supporting women who use drugs. A few private facilities cater to these needs, but they are expensive and out of reach for most women.

While the Department of AIDS Control is now funding Targeted Interventions for HIV prevention among these women, they are limited to the north-eastern part of the country. Besides this, interventions are primarily designed for male drug users, although some of which have been able to successfully reach their female partners with services.

Alliance India, along with NGOs like Sahara Aalhad, Voluntary Health Association of Meghalaya, SASO, Shalom and Dedicated Peoples Union to name a few, have demonstrated viable models of gender-responsive services for female drug using populations. Effective interventions include healthcare provided by female providers; counselling; referral to sexual & reproductive health services; harm reduction services (access to clean needles and syringes and Oral Substitution Therapy); detoxification and HIV-related care, diagnostics (blood tests required before and during antiretroviral therapy); prevention of parent to child transmission of HIV; safe spaces for women; and legal aid.

In our new film Out of the Shadows: Women Who Use Drugs in India activists and community members describe their challenges and their need for accessible, targeted, and quality harm reduction interventions to improve their health and protect their rights. Marginalized and unreached, these women are not well served by current interventions, and unsafe sexual behaviour and shared injecting equipment significantly increase their risk for HIV and hepatitis C infection. Exclusion, discrimination and violence further compound their vulnerability.

Women who use drugs need to emerge from the shadows, and programming in India can no longer afford to ignore them and the difficulties they face. There is a clear need for leadership and support to expand interventions for them by both government and civil society. We owe it to those women who are still in darkness and afraid to come out and live healthy and dignified lives.

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The author of this post, Simon W. Beddoe, is Advocacy Officer: Drug Use & Harm Reduction, at India HIV/AIDS Alliance in New Delhi.

With funding from European Union, the Asia Action on Harm Reduction project supports advocacy to increase access by people who inject drugs (PWID) in India to comprehensive harm reduction services and reduce stigma, discrimination and abuse towards this vulnerable population through engagement with PWID and local partners in Bihar, Haryana, Uttarakhand, Delhi and Manipur.

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Advocating for Stigma-free Healthcare for Female Sex Workers

Advocacy coalitions under Koshish have successfully engaged with stakeholders to identify sexual and reproductive health needs of vulnerable populations like female sex workers. (Photo by Peter Caton for India HIV/AIDS Alliance)

Advocacy coalitions under Koshish have successfully engaged with stakeholders to identify sexual and reproductive health needs of vulnerable populations like female sex workers. (Photo by Peter Caton for India HIV/AIDS Alliance)

While conducting community consultations in East Godavari district of Andhra Pradesh, the Koshish programme team learned that female sex workers (FSWs) in the district faced numerous challenges in accessing healthcare services, including stigmatizing behaviour, discrimination, and apathy of service providers. A majority of FSWs who spoke at the consultations mentioned that counsellors at the Integrated Counselling and Testing Centre (ICTC) at the government hospital at Kakinada were highly insensitive and asked unnecessary questions while providing them services.

The advocacy coalitions set up under Koshish took note of the matter and decided to collect evidence from the community and flag the issue to relevant authorities. The team documented experiences of 50 community members and approached the Additional District Medical & Health Officer for redressal. After the initial briefing on the project and its activities, the community members shared their concerns. They narrated how clients were asked irrelevant questions by the counsellors and faced deliberate delays in testing and reports.

Appreciating the difficulties faced by FSWs, the official instructed his office to issue a circular to all ICTCs to remind them of their obligation to provide client-friendly services and not delay sample collection deliberately. He also facilitated the provision of other social security schemes and entitlements to these community members like Aadhar cards, Antyodaya cards, caste certificates and even voter registration. Later, the officer organized a review meeting with all counsellors in the district and invited Koshish partners. In the meeting, the official emphasized to the counsellors, “Key populations are to be given priority in availing health services.”

Supported by the European Union, Alliance India’s Koshish programme advocates for policies and strategies on sexual and reproductive health (SRH) and rights for people living with HIV (PLHIV) including key populations in India. The programme is implemented in Maharashtra, Tamil Nadu, Andhra Pradesh and Gujarat. The advocacy coalitions under Koshish have successfully engaged with stakeholders and identified unfulfilled SRH needs of PLHIV. With these coalitions in place, Koshish makes sure that voices of communities affected by HIV/AIDS are heard by decision makers and the problems they face every day remain at the heart of the programme’s state-level advocacy agenda.

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India HIV/AIDS Alliance works closely with PLHIV in India through its Koshish programme which strengthens 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.

Wrapping Up ICAAP11 (November 22, 2013, Bangkok, Thailand)

Today concludes the 11th International Congress on AIDS in Asia and the Pacific (ICAAP 11) in Bangkok, Thailand. Alliance India is wrapping up our participation in the meeting with two sessions focused on the sexual and reproductive health (SRH) of people living with HIV (PLHIV) and a closing press conference on building the capacity of MSM and transgender organisations to partner with government to improve HIV prevention. Don’t miss this last opportunity: please join us!

Skills Building Workshop:

  • Beyond My Infection: A workshop to build capacities of PLHIV and Key Populations as advocates on Sexual and Reproductive Health and Rights (SRHR)

        Friday, November 22, 10:00am-1:00pm, Hall O, QSNCC

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Poster Discussion:

  • Cervical Cancer Awareness in Women Living with HIV: Findings from the Koshish Baseline in India

        Friday, November 22, 12:45-1:45pm, Plaza, QSNCC

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Press Conference:

  • Building capacity of MSM & TG CBOs to partner with Government HIV prevention interventions in India

        Friday, November 22, 2-3pm, Press Conference Room, QSNCC

Please download our roadmap of sessions at ICAAP that include Alliance India team members or discussions of our work. It includes a full list of our 31 posters describing our responses to a range of key priorities in India’s epidemic. Please also visit our Community Booth (#C3) to learn more about our work.

“11 for ICAAP 11”: A Selection of Alliance India Posters at ICAAP (November 17-22, 2013, Bangkok, Thailand)

Alliance India is presenting a total of 31 posters at the 11th International Congress on AIDS in Asia and the Pacific (ICAAP 11) in Bangkok, Thailand, 17-22 November 2013. To mark the 11th ICAAP, below are a selection of 11 of our posters displayed in Bangkok that detail our work supporting community-based programming for people living with HIV (PLHIV), men who have sex with men (MSM), transgenders, hijras, sex workers and people who inject drugs (PWID), all key priorities to addressing India’s complex epidemic.

Paving the Pathway: PLHIV community consultations enhance national care and support programme in India

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Factors Influencing SRH Service Uptake by PLHIV: Findings from the Koshish baseline study in India  

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An Emergent Crisis: Addressing the Hepatitis C Epidemic in People Who Inject Drugs (PWID) in India

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By the Community, For the Community: Involving PWID in Assessment of Drug-using Patterns Assessments

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Identifying Access Barriers for Transgenders Seeking Gender Transition Services in India

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Community-led Advocacy to Address SRH Needs of PLHIV: Experience from the Koshish programme in India

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Service without a Smile: Pehchan study of the friendliness of HIV services to sexual minorities in India

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Positive Rights and Sexual Health: A review of SRH laws and policies for PLHIV in India

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Tracking Organisational Development of Sexual Minority CBOs in India Using Pehchan’s ‘CBO CyclePoster_Page_10

Power in Our Hands: Increasing involvement by sexual minorities in HIV programme oversight in India 

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Promoting Entrepreneurship among Sex Workers to Reduce HIV Vulnerability in Andhra Pradesh

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

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Stigma and discrimination often prevent women living with HIV from accessing the essential health care services. (Photo by Prashant Panjiar for India HIV/AIDS Alliance)

It was 5am. Anita (name changed) was about to give birth. The labour pain was leaving her numb. Her family rushed her to the nearby government hospital, but the doctors refused to attend her. She kept fighting the pain. The morning of hope soon turned into an evening of despair. Anita had a stillbirth. Her only fault: she is HIV positive.

Sadly, Anita’s case in Palanpur city of Banaskantha district of Gujarat is not unique. Women living with HIV (WLHIV) face discrimination everywhere: they are ostracized by their families, ridiculed and abused by society, and refused healthcare by providers.

Following the incident, a number of protests were held by Banaskantha Network of Positive People (BanasNP+) but all in vain. Seeing no action at local level, Gujarat State Network of Positive People (GSNP+) picked up the case. Along with BanasNP+, GSNP+ submitted a detailed report to the health commissioner of the state and Gujarat State AIDS Control Society (GSACS).

Fortunately, the health commissioner was proactive. He immediately took up the case and sent a team to Palanpur for further investigation. A circular was also issued to all the hospitals citing a high court ruling that states that people living with HIV (PLHIV) should not be denied care and treatment because of their positive status.

In the meantime, GSNP+ documented various cases of such stigma and discrimination against WLHIV by healthcare providers across Gujarat. GSNP+ then organised a state-level advocacy meeting with GSACS and presented these documented cases. Following this, GSACS decided to conduct priority visits to the districts along with GSNP+. A meeting was called by GSACS in Palanpur that brought together the resident medical officer (RMO), gynaecologists, ART medical officer, paediatric doctors, and staff from the District AIDS Prevention and Control Unit (DAPCU). The discussion clarified the roles and responsibilities of each medical department and highlighted the particular role of gynaecologists. The meeting sought commitment from healthcare providers that WLHIV shall not be discriminated against and will get the same treatment as other patients.

The impact of this advocacy meeting was visible within a few weeks. One WLHIV who had earlier been asked to go to Ahmedabad for delivery by the hospital was now given proper care. She delivered healthy twins.

In Palanpur, these efforts have paid off and shown how partnership and coordination with the concerned government departments can work positively, creating a win-win situation. Yet 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 our rights.

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The author of this post, Daxa Patel, is head Gujarat State Network of Positive People (GSNP+). One of India’s most prominent HIV activists, Daxa collaborates with India HIV/AIDS Alliance on our Koshish and Vihaan Programmes.

With funding from the European Union, our Koshish programme strengthens civil society organizations and networks that work with PLHIV and other marginalized groups, such as men who have sex with men, transgenders, sex workers and people who inject drugs, to effectively advocate for policies to improve the sexual and reproductive health and rights of PLHIV in India. This programme 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.

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.

Too Little, Too Late is Not Enough: International Overdose Awareness Day 2013

The right medical help at the right time can help avert overdose-related deaths. (Photo by Prashant Panjiar for India HIV/AIDS Alliance)

The right medical help at the right time can help avert overdose-related deaths. (Photo by Prashant Panjiar for India HIV/AIDS Alliance)

In the past few years, a number of famous celebrities including Michael Jackson have died due to fatal drug overdose. The media is quick to target the lifestyles of these stars, paying little heed to the grieving families and fans. Some of these deaths have left us surprised, while others we saw coming.

For people who inject drugs (PWID), a fatal drug overdose is an occupational hazard. In India, overdose deaths are particularly common among street-based drug users in bigger cities. Often, these deaths are not reported or even recorded for fear of legal consequences. Like most countries, Indian law criminalises illicit drug use. When someone overdoses, they seek medical help as the last resort, not wanting to deal with the possibility that the police might be called to the hospital.

Anyone who has witnessed an overdose will tell you about frustration and helplessness. The extent of the problem in India is unknown, as there is little reliable data on the annual number of drug overdose deaths. Estimations by NGOs working in the field indicate that in areas with high levels of injecting drug use, hundreds of people die from overdose each year. These cases are mainly due to mixing drugs or use of drugs of poor or unknown quality. Those of us who use drugs or know people who do always need to be aware of the underlying dangers of using drugs in combination. People who have been trying to quit or have been abstinent for a while — such as after a treatment programme or incarceration— are more prone to overdose than those who regularly use drugs.

Preventing overdose-related deaths can require just a few simple steps. A Naloxone injection in time can save a person’s life. What is needed is to ensure that Naloxone — a drug included in India’s National List of Essential Medicines — is readily available at all public healthcare facilities. Unfortunately this is not yet the case. In a number of recent cases, the emergency ward has had no Naloxone available. Relatives or friends of the overdosing PWID have had to rush to procure Naloxone from nearby pharmacies, where they are charged 10- to 20-times the actual price by staff who exploit the urgency of the situation.

Naloxone is an integral and necessary part of effective programming for PWID, but it still needs to be fully integrated into India’s national programme. Alliance India has incorporated overdose prevention and management into the harm reduction services provided to PWID under our Hridaya programme. Our Asia Action programme complements these efforts by supporting advocacy for expanded access to Naloxone and other interventions to reduce overdose-related deaths.

International Overdose Awareness Day is an opportunity to raise awareness about drug overdose, reduce stigma, and advocate for expanded access to overdose-related services. Join Alliance India in solidarity with friends from all over the world as we remember those who have died and recommit to our efforts to end the epidemic of overdose-related deaths.

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The author of this post, Simon W. Beddoe, is Advocacy Officer: Drug Use & Harm Reduction at Alliance India.

With funding from European Commission, the Asia Action on Harm Reduction programme supports advocacy to increase access by people who inject drugs (PWID) to comprehensive harm reduction services and reduce stigma, discrimination and abuse towards this vulnerable population. In India, the three-year programme will initially engage with PWID and local partners in Bihar, Haryana, Uttarakhand, Delhi and Manipur. 

Spanning five countries (India, China, Indonesia, Kenya, and Malaysia), Community Action on Harm Reduction (CAHR) expands harm reduction services to more than 180,000 people who inject drugs (PWID), their partners and children. The programme protects and promotes the rights of these groups by fostering an enabling environment for HIV and harm reduction programming in these five countries. CAHR is supported by the Ministry of Foreign Affairs, Government of Netherlands. 

In India, CAHR is called ‘Hridaya’ and is implemented by India HIV/AIDS Alliance in partnership with SASO, Sharan, and a number of community-based harm reduction organisations and networks. This programme helps build the capacity of service providers, makes harm reduction programmes more gender-responsive, improves access to services and advocates for the rights of PWIDs. In addition to providing services, Hridaya has a strong capacity building component to support advocacy, knowledge management and improved services for PWIDs.

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.