“Do we count?” A question for AIDS 2014 and beyond

AIDS2014 _FB_Postcard_Do we count meme

Every two years, researchers, implementers, policy makers, and community activists come together at the International AIDS Conference to take stock of the pandemic: Where are we now? Where have we been? Where are we heading? Discoveries are heralded and strategies dissected. There are always more questions than answers, but there is one question that needs to be answered at AIDS 2014 and beyond: Do we count?

Do the lives of men who have sex with men, people who inject drugs, sex workers, transgenders and even people living with HIV — especially those from these key affected populations — really count? On a basic level, the answer must be a resounding and unequivocal “YES!” Every human life counts. Every life has equal value. Yet, while an affirmative chorus may echo in the halls of the conference, easy rhetoric will not be enough.

Data analysis by UNAIDS indicates that as many as half of all new HIV infections globally occur in key populations. This should come as no surprise. The disproportional concentration of the virus in these groups is hardly news, shaping the trajectory of the epidemic and driving the complex stigma that still defines HIV/AIDS.

Though we are frequently reminded that we are in the era of evidence-based public health, data-driven decision-making, and performance-based metrics, the evidence on HIV vulnerability in key populations is routinely ignored. We aren’t even counted in many places. Surveillance fails to find us. Not surprisingly, funding for HIV services responsive to our needs remains slight.

Slowly but surely the message is getting through. The large players in the global HIV response are lining up to affirm their commitment to these (new?) priorities. On July 11, 2014, the World Health Organisation released a long-awaited and rapidly developed publication, Consolidated Guidelines on HIV Prevention, Diagnosis, Treatment and Care for Key Populations. It is an impressive document written and reviewed by a Who’s Who of experts working with and representing these groups.

There can be no doubt about the sincerity or good intentions of the guidelines’ authors, and this document has the potential to influence policy and practice globally. Yet questions persist in the willingness of institutions — governments, donors, development agencies and civil society — to embrace their fundamental responsibility to the health of key populations and invest accordingly in a sustained and broad-based effort to end the unremitting toll of HIV and AIDS on our lives.

New technical guidelines and progressive policies can be applauded, but to make the difference intended, they must be applied. In order for them to be applied, investments must be targeted to fill these gaps and expanded to match the scale of our need. The proof of commitment will be in the expansion of funding invested in programming for key populations. Now is the time to prove we count.

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The author of this blog, James Robertson, is Executive Director of India HIV/AIDS Alliance  in New Delhi.

Alliance India brings together committed organisations and communities to support sustained responses to HIV in India. Complementing the Indian national programme, we work through capacity building, knowledge sharing, technical support and advocacy. In collaboration with partners across India, Alliance India supports the delivery of effective, innovative, community-based HIV programmes to key populations affected by the epidemic.

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My Trans Reality: An Interview with Tista Das, Founder, SRS Solutions

(Photo courtesy of Tista Das)

(Photo courtesy of Tista Das)

An important step in the process of self-affirmation for many transgender people is to adapt their physical appearance to align with their gender identity. Many transgenders face significant challenges in accessing transition-related services in India. Government hospitals seldom offer services like Sex Reassignment Surgery (SRS) and the private ones are too costly for many community members to afford. Without other options, many turn to quacks and other unlicensed practitioners for help.

SRS Solutions is a community-led and self-funded initiative that provides SRS-related information, counselling, and referral services to trans people in Kolkata. It was founded by Tista Das, a self-identified trans woman. In an interview with Alliance India’s Ankita Bhalla, Tista opened up on the tough times she has faced as a trans woman and what motivated her to found SRS Solutions.

Q: When did you acknowledge your gender identity? What was the response from friends and family?

Tista Das (TD): My parents always insisted that I was a boy, but I always felt like a girl. All my childhood playmates were girls. I used to behave and dress like them. I felt discomfort among the boys, and I was always forced to use the boy’s toilet. When one of my closest schoolmates was undergoing menstrual changes, I had an inner desire to be able to do so too. I missed the same changes in my body.

I came face to face with my trans reality when I saw a photo of female genitals when I was in Class 8th. I was perplexed. The question ‘why was I different from girls?’ kept playing in my mind. I was desperately searching for a way out of this anatomical cage. I wanted to align my body with my psyche. Then I came upon an article of postoperative trans women in a leading Bengali fashion magazine. I jumped in joy, but my entire family and most of my friends were strongly against my desire. In my first medical intervention, I was taken to a psycho-therapy clinic. The clinician there was understanding, and she requested my parents to let me live my way. My parents were against this and searched for a new psychiatrist, who gave me six electric shocks to cure my ‘disorder.’

I was lucky to have some supportive friends. Every day I changed from male to female at my friend Nupur’s house. My friends never refused me, even after they became subject to ridicule by neighbors because of me. Most people only consider two genders in life: male and female. They are seldom think beyond this conventional gender frame.

Q: What prompted you to start SRS Solutions?

TD: While my peers were going to college and checking out career options, I was denied admission to university because of my gender identity. While my friends where enjoying gully cricket, I dealt with insults from neighbors who took it upon themselves to make my family’s life and mine miserable. I was scared, upset and totally at a loss.

There was a strong urge in me for surgical intervention, but I had no money. I was introduced to the eminent author and professor Nabanita Debsen who told me about an executive opening at a sister concern of Indian Oil Corporation for a trans woman. I successfully made it through. Now I had a job and an income, but no place to undergo my physical transformation. Government hospitals were just playing with my emotions and wasting my time. Private care was not what I could afford. I underwent the same agony each day.

I underwent psychometric testing—a primary diagnostic procedure to conform whether a person is really suffering from gender dysphoria and is eligible for SRS—and was recommended for hormone replacement therapy. But again my resources were limited. I approached government hospitals in vain for genital reconstruction. I lost all hope. Then my parents came to my support. My mom sold her jewelry and my father took some loans. I got donations from school teachers. Still it was not enough. Finally, a miracle happened. I got an opportunity to act in an English short film as a protagonist girl. This income helped my desire come true.

The hardships I had faced seeded within me the idea of an organization where people in gender distress can get proper solutions. My desire was made stronger by the suicide of one of my transgender classmates. I finally established the SRS Solutions in Kolkata in 2012.

Q: How do you feel post transformation?

TD: I have chosen to be a woman neither to get any socio-legal and political advantages nor to get a sex partner. It was unbearable for me to live in an unwanted body, and every day I desperately hunted for a way out. I always loved to see myself as a girl physically in front of the mirror. I always felt trapped in a male body. I felt incomplete and wanted to align my body with my psyche. I only wanted to be a beautiful, decent girl, nothing else.

Q: What are the common problems faced by trans people in India related to SRS?

TD: Trans people in India who want SRS face problems in arranging the finances needed, identifying qualified facilities for surgeries, and gaining social acceptance for their transformation. A large number of us are oppressed because of the alarmingly low level of awareness at all levels of society. Few doctors are skilled in SRS, and most don’t understand gender identity issues. The pressure of having to fight society at every step, along with our own discomfort of being stuck in bodies we wish to change, is highly traumatic.

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Readers can learn more about the challenges faced by transgenders and hijras in accessing gender transition services in India in our recent publication,Transforming Identity, which presents findings of our recent research on this topic.

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

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,  SAATHII, Sangama, 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.

More or Less Equal: Reflections on Freedom

In India, there is a need to make sexuality more visible and to voice issues around sexuality more publicly, without stigma and shame. (Photo by Peter Caton for India HIV/AIDS Alliance.)

In India, there is a need to make sexuality more visible and to voice issues around sexuality more publicly, without stigma and shame. (Photo by Peter Caton for India HIV/AIDS Alliance.)

The Indian Constitution declares that all Indians are granted the Right to Freedom of Speech and Expression. On Independence Day, Shaleen Rakesh explores what freedom means for young Indians struggling to express their sexuality:

I am at the barber’s shop, and reflecting on the sensual quality of something as practical as having a haircut in Delhi. The guy is massaging my scalp, it is highly tactile, and I am instantly aware of it. In India, there seems to be an unconsciousness around the body – you don’t have personal space, people do not think it wrong to crowd close together, to touch one another. In buses and the metro, you become aware of a very close and mostly unselfconscious proximity.

This unconsciousness of certain aspects of anatomy and gender and the way you are in public is a paradox – in some ways India is a tolerant society, since it recognizes homo-affective and homosocial relationships. As far as sexual behaviour is concerned, India can be very accommodating, but it becomes very intolerant and homophobic when it comes to a question of identity.

It seems like a constant partition of freedoms. You are free to do what you want but not express freely who you are.

There is a need to make sexuality more visible and to voice issues around sexuality more publicly without stigma and shame. People who are straight also feel sexuality is silenced in India: they are victims of a similar oppression. The objective of breaking silence is to look at the issue from a cultural point of view.

When I’m still waiting for my shampoo, three or four young guys walk in. One of them is dark-complexioned and is looking at himself very intently in the mirror. His friends start pulling his leg: “Dude, what a fabulous complexion you have! How come you don’t have a girlfriend?” The boy was obviously embarrassed about being dark and being teased publicly but couldn’t find the words to retaliate and offered an embarrassed smile. His friends were laughing.

Soon the friendly banter started recounting failed sexual overtures with girls. I thought the young guys, in their talking and making fun of their own sexual feats – or lack of them – there was a great irony at the core, and a certain sadness also. I felt sorry for them for a moment, thinking, why do they need to be in this place where the only way they can articulate some of their frustrations is in the form of a joke? I identified with it. At 19, I felt oppressed about my own sexuality. Of course, I couldn’t even talk about it in barber shops. I still can’t actually. Invisibility and silence are the problem we share.

As I walk out of the barber shop, I realize how conflicted and bottled up most Indians are when it comes to talking about sexuality. It’s a cultural prison most of us find difficult to step out of.

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The author, Shaleen Rakesh, is Director: Technical Support, India HIV/AIDS Alliance.

India HIV/AIDS Alliance (Alliance India) is a diverse partnership that brings together committed organisations and communities to support sustained responses to HIV in India. Complementing the Indian national programme, Alliance India works through capacity building, knowledge sharing, technical support and advocacy. Through our network of partners, Alliance India supports the delivery of effective, innovative, community-based HIV programmes to key populations affected by the epidemic.

Slow but steady: India’s march to equality for sexual minorities

With the Indian government adopting new measures, sexual minorities in India see a new ray of hope. (Photo by Peter Caton for India HIV/AIDS Alliance)

With the Indian government adopting new measures, sexual minorities in India see a new ray of hope. (Photo by Peter Caton for India HIV/AIDS Alliance)

Over the past five years or so, India has witnessed seismic shifts in matters concerning the human rights of sexual minorities. Despite being stymied by right-wing groups cutting across religious lines, the Government of India has stood by its commitment to protect the rights of these stigmatised and ignored communities.  Though it is too early to predict how new measures will change the lives of sexual minorities in India, it is encouraging to see the government acknowledge their existence and provide some hope of change.

Consider some of the actions by the Government of India:

Section 377 of Indian Penal Code

On July 2, 2009, in a landmark judgment, Delhi High Court ruled that Section 377 of Indian Penal Code violates Articles 21, 14 and 15 of the Indian Constitution. The judgment was widely celebrated and appreciated across the nation. But even before euphoria could lessen, a panoply of religious institutions queued up at the Supreme Court of India to challenge the Delhi High Court judgment. In total, 15 Special Leave Petitions (SLPs) challenging the decision were submitted to the apex court including petition from the Delhi Commission for Protection of Child Rights.

Final Supreme Court hearings appealing the 377 decision began in February 2012. When the Supreme Court requested the Government of India clarify its stand on the Delhi High Court decision, the government came out in support of decriminalising homosexuality and indicated that it would not challenge the verdict. In March 2012, the Supreme Court reserved the matter for judgment. In addition, the Government of India has accepted one of the recommendations in the UN’s 2012 periodic review of human rights and has agreed to study the implications of the decriminalisation of same sex sexual relations in light of ongoing homophobia throughout India society.

A country-level report published by the UN Working Group on Human Rights in India entitled ‘Human Rights in India – Status Report 2012’ includes a case study on Professor Siras, an scholar at Aligarh Muslim University, whose rights of privacy, housing, and employment were denied by the University due to his sexual orientation. His death in April 2010 continues to remain uninvestigated, a situation that indicates that even though same-sex behavior may be decriminalized, there remains significant societal stigma that continue to prevent the full enjoyment civil, legal and human rights by LGBT Indians.

Increased Access to Social Schemes

The Aadhar card is a social scheme initiated by the Indian government in 2009. It includes a 12-digit individual identification number issued by the Unique Identification Authority of India and is equivalent to the Social Security card in the United States. In Aadhar’s second phase, the government has included an additional category under sex in addition to male and female: transgender. Similar provisions have been made in voter ID cards and passports, but in each case the option is ‘other,’ not ‘transgender.’ Recently, the government issued an order allowing hijras to use their guru’s name instead of their father’s/mother’s when applying for a voter ID card. (A ‘guru’ is the head of a hijra family or community.) This decision recognizes that many hijras are estranged or rejected by their biological families.

National Youth Policy

In 2012, the Government of India has included issues of sexual minorities in its National Youth Policy for the first time. The draft document says, ‘Transgenders have for long been the butt of ridicule and derision of the society. They have virtually lived a life of complete segregation from the mainstream, and gays and lesbians have never been accepted in the society as same gender sex has always been treated in our society as perverted and immoral behaviour. The result of these deeply embedded stereotypes and biases has been that gays and lesbians are reluctant to express their sexual preferences openly.’ The policy also mentions that special efforts will be made for employment and entrepreneurship for marginalised youth and for building the capacities of community-based organisations to create awareness of HIV and its social and health-related implications.

Justice Verma Committee Report on Rape Laws

In January 2013, Justice Verma committee submitted its report to the Home Ministry. The special committee was constituted following the brutal gang rape and murder of a female student in New Delhi in December 2012. In its report, the committee observed that there is an immediate need to recognise different sexual orientations as an authentic part of the human condition and that the use of word ‘sex’ in the Article 15(c) of the Indian Constitution includes sexual orientation as well. One of the recommendations of the committee is to disseminate correct knowledge in respect of sexuality and sexual options, without enforcing gender stereotypes. The report stresses the importance of communication efforts to encourage respect and understand gender, sexuality and gender relations amongst youth. The report also suggests making rape laws gender-neutral as sexual assault of males and transgenders is a reality.

 It is laudable that the Government of India has taken such positive steps towards making equality a reality for sexual minorities. Though these efforts suggest that India’s sexual minorities have entered a period of social restructuring, India remains a long way from realizing the dream of full equality, in law, policy and practice. For example, the recent law on surrogacy states that only a man and a woman who are married for at least two years will be allowed to engage surrogacy services in India. While facing ongoing barriers to equality, we should not be discouraged from claiming our status as full and equal citizens of India. As Martin Luther King, Jr. once said, ‘Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so must straighten our backs and work for our freedom.

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The author of this post, Yadavendra Singh, is Senior Programme Officer: Capacity Building for Alliance India’s Pehchan Programme.

With support from the Global Fund, Pehchan 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, SAATHII,Sangama, 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. 

International Women’s Day 2013: Empowering Women Living with HIV

Celebrate International Women’s Day with almost one million Indian women living with HIV.  (Photo © 2012 Prashant Panjiar for India HIV/AIDS Alliance)

Celebrate International Women’s Day with almost one million Indian women living with HIV. (Photo © 2012 Prashant Panjiar for India HIV/AIDS Alliance)

International Women’s Day was first officially observed in 1911 and remains an annual opportunity to call for change and celebrate the many acts of courage and determination by ordinary women who play an extraordinary role in the world’s future.

It’s hardly been three months since India came to a standstill after the gruesome gang rape in New Delhi. The incident generated national and international attention and was condemned in India and abroad. It has left us determined to find answers to difficult but basic questions: Are India’s women really safe, both inside and outside their homes? Can they celebrate their freedom? How can we ensure that all women are able to pursue their dreams?

Over the years, considerable effort has gone into social, political and economic empowerment of women, but progress has been too slow. For women living with HIV (WLHIV) in India, the challenges are multiple. These women encounter daily stigma & discrimination and face barriers to accessing HIV prevention, treatment and care as well as sexual and reproductive health (SRH) services. WLHIV often lack status and decision-making power and have inadequate control over financial resources and limited mobility to travel to find better jobs. Even today, laws and policies impede their access to health care and other services.

Though the sexual reproductive health and rights of people living with HIV (PLHIV) remain largely unrealized in this country, India HIV/AIDS Alliance is working to address some of the issues faced by WLHIV through our Koshish Project. With financial support from European Commission, Koshish affirms the principles of empowerment and partnership as core strategies to tackle the problems faced by these women, including stigma & discrimination, inaccessibility and non-availability of services and the lack of comprehensive SRH for PLHIV.

Through partners in Andhra Pradesh, Gujarat, Maharashtra and Tamil Nadu including PLHIV networks in these states, Koshish works with providers and decision-makers to help make barrier-free services available and formulate sensitive and progressive policies for PLHIV and key populations. Programme partners have proactively engaged these stakeholders to advocate for quality SRH services. Advocacy has focussed on issues like maternal health services for WLHIV, cervical cancer screening, quality counselling and increased awareness of SRH and rights.

It is a now time for us to look ahead and celebrate the untapped potential and opportunities that await future generations of women including WLHIV. As we enjoy the song One Woman  to be released by UN on this International Women’s Day, let us dedicate our time and resources and pledge our commitment to WLHIV by mobilizing and empowering them and jointly advocating for their rights and needs in India and all over the world.

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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 programme which aims to strengthen civil society organisations and networks that represent and work with PLHIV and other marginalised groups, such as MSM, transgenders, sex workers and IDUs, to effectively advocate for policies to improve the sexual & reproductive health and rights (SRHR) 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.

From Inequality to Inclusion: Recognizing the Vulnerabilities of Sexual Minorities in the Response to the Delhi Gang-Rape

The Justice J.S. Verma Commission stresses that the word ‘sex’ in the Constitution of India should be understood to include sexual orientation. (Photo © 2012 Peter Caton for India HIV/AIDS Alliance)

The Justice J.S. Verma Commission stresses that the word ‘sex’ in the Constitution of India should be understood to include sexual orientation. (Photo © 2012 Peter Caton for India HIV/AIDS Alliance)

Convened in the aftermath of the horrific gang-rape and murder of a 23-year-old woman in New Delhi this past December, a special commission headed by former Chief Justice J.S. Verma was tasked to suggest amendments to criminal laws to improve the security of women in India and ensure speedier justice.

In its 657-page report released in January 2013, the Commission has provided an initial set of recommendations, but it has also gone a step beyond its mandate. Unexpectedly and to its great credit, the report has made special mention of India’s sexual minorities, who are too often also victims of social stigma, discrimination and violence.

Even in the first chapter of the report, the Commission stresses the need to acknowledge differences in sexual orientation as ‘a human reality’ and recognizes the range of sexual and gender identities.  It also makes clear that the use of the word ‘sex’ in the Constitution of India should be understood to include sexual orientation. The full passage is a remarkable testament to social progress in India:

We must also recognize that our society has the need to recognize different sexual orientations a human reality. In addition to homosexuality, bisexuality, and lesbianism, there also exists the transgender community. In view of the lack of scientific understanding of the different variations of orientation, even advanced societies have had to first declassify ‘homosexuality’ from being a mental disorder and now it is understood as a triangular development occasioned by evolution, partial conditioning and neurological underpinnings owing to genetic reasons. Further, we are clear that Article 15(c) of the constitution of India uses the word “sex” as including sexual orientation.”

The report also powerfully justifies the inclusion of sexual minorities as indisputably entitled to their human and legal rights and fully embraced as equal citizens:

“Thus, if human rights of freedom mean anything, India cannot deny the citizens the right to be different. The state must not use oppressive and repressive labeling of despised sexuality. Thus the right to sexual orientation is a human right guaranteed by the fundamental principles of equality. We must also add that transgender communities are also entitled to affirmation of gender autonomy. Our cultural prejudices must yield to constitutional principles of equality, empathy and respect.”

The report proposes qualitative indicators measuring the perception of safety and security for women and other vulnerable groups as a tool to improve police performance and accountability. It also makes case for ‘community policing,’ a strategy to involve local populations and increase confidence in the safety of the citizenry. The report places emphasis of building capacities of the police on both gender-based violence and discrimination.

These suggestions and the arguments used to justify them are not only indicative of dynamic social change in India but also offer an unprecedented opportunity for civil society—including those of us working to improve the health and wellbeing of marginalized communities—to build and sustain collaboration with law enforcement agencies and the judiciary.

Through this engagement, we can begin to address some of the structural forces that increase vulnerability to HIV and hamper efforts to create an enabling environment for women, sexual minorities and other groups who continue to live in constant fear for their safety and security.

Read our January 3rd blog, The Other Epidemic: Gender-based Violence in India.

Read the complete report here.

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The author of this post, Yadavendra Singh, is Senior Programme Officer: Capacity Building for Alliance India’s Pehchan Programme.

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, SAATHII, Sangama, 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.

From Addiction to Action

Photo: Francis Joseph ( in middle) during a meeting of Alliance India members. Francis is the Programme Officer for Hridaya, an HIV and harm reduction programme supported by the Community Action on Harm Reduction (CAHR), Netherlands and implemented by Alliance India. Photographer: G Charanjit Sharma

Francis Joseph (center) with Alliance India colleagues. [Photo by G. Charanjit Sharma]

Francis Joseph is Programme Officer for Hridaya, our HIV and harm reduction programme in India supported through the five-country Community Action on Harm Reduction (CAHR) programme with funding from the Government of the Netherlands. Hridaya works in partnership with SASO, Sharan, a number of community-based harm reduction organisations, and the Indian Drug User Forum (IDUF), a national network of people who use drugs.‎

In this interview, Francis discusses the National AIDS Control Organisation’s approach to prevent HIV among people who inject drugs (PWID) and the work that Hridaya does to provide an additional package of services to this community, their spouses, children and families. Francis offers us a glimpse into the personal and programmatic consequences of social and self-stigma against people who inject drugs, and opens up about his personal connection to the PWID community which inspires his work every day.

Q: Why is a programme like Hridaya important especially in a country like India?

Francis Joseph (FJ): The National AIDS Control Organisation has adopted harm reduction strategy under the National AIDS Control Programme Phase three (NACP III) to prevent HIV amongst people who inject drugs (PWID), and has scaled up services through targeted interventions implemented by NGOs. The primary objective under the NACP III was to halt and reverse the spread of the HIV epidemic by 2012 and to cover 80% of the overall population of PWIDs through targeted interventions. By reaching out to a significant proportion of the estimated injecting drug users (IDU) population, the NACP III laid the foundation for an effective and evidence-based comprehensive response to halt and reverse the HIV epidemic among IDUs.

While considerable progress was made under NACP III with respect to the scale-up of interventions for IDUs as well as quality assurance in the country there were areas that were identified as emerging areas of concern. Some of these services include sexual and reproductive health services for spouses/sexual partners of male PWID, inadequate regulated drug treatment services and active engagement of PWID within the programme. The country lacks leaders from this community and especially lacks networks of drug users.

Any successful harm reduction approach requires greater involvement of PWID. Hridaya aims to empower drug users, identify individuals and build them as leaders from this community so that they are informed, educated and can voice for their basic human rights. Hridaya’s overall aim is to empower the drug using community in each of its focus states so that they can strengthen the harm reduction approach at the state and district level, and develop a local resource pool for capacity building initiatives.

Q: There are so many preconceived notions about IDUs. How does this affect their ability to seek treatment? Can you talk a bit about stigma?

FJ: Generally, people perceive drug users as criminals, social outcasts, and a threat to society. This makes it difficult for people who want to reach out to them to even contact them, or to build rapport and trust with them, and this is incredibly important since these factors further fuel the HIV epidemic in the country.

PWIDs are generally assumed to be HIV positive and are, hence, refused treatment when care and treatment is required. There have been many instances of PWID being denied treatment at public health care facilities, getting arrested and being treated with police brutality, and experiencing community hostility.

All of this leads to a complete lack of access to treatment and other essential services. The shabbily dressed appearance and unhygienic conditions of a number of PWIDs leads to them being denied access to any service. This has led to a sense of mistrust and has fuelled stigma and discrimination.

There was an incident in Delhi where a PWID burst his femoral vein due to injecting and was rushed to a nearby hospital. He was bleeding profusely and needed immediate critical care. The doctor on duty refused to help this man before an HIV test had been done on him. All through this, the man continued to be in incredible pain and was near death, but no one would help him.

Q: What motivates you about your job? Are there people you’ve met who inspire you to continue working in this area?

FJ: I come from the same community of PWID and have also experienced the pain of rejection, isolation, denial from family, friends, relatives and society at large. I know exactly what it feels like being socially rejected and ostracized, denied for many social entitlements and disowned by my family. I have lived a life full of negativity and have seen the inside of treatment centres and incarceration.

There are millions of people like me and very few have been fortunate enough to have come out of their dependence. I feel that I have a special calling that has motivated me to do something for my community. I began my new life of sobriety from the very basics, taking one day at a time, and I painstakingly built it up to where I am now. Today, I’m at a level where my voice is heard and I can speak up for the needs of the people who share a common background with me.

Q: What do you wish more people in general society understood about harm reduction and IDUs?

FJ: There are three approaches to any drug treatment programme: Drug demand reduction, drug supply reduction and harm reduction. The first two approaches see the solutions to this problem as generating awareness in reducing the desire to use drugs and prevent and delay the onset of drugs use to disrupt the supply of drugs through the implementation of draconian laws. Both these approaches focus on abstinence, which has constantly proven to result in a very poor outcome.

We at Hridaya follow the harm reduction approach, which-as the name suggests–aims to reduce the harm associated with injecting drugs use, such as HIV and Hepatitis C, and not eliminate the drug use per se. General society perceives that the only option to treat drug users is for them to follow the route of abstinence, which is practically impossible since there may be a certain segment of people who would never be able to give up drugs completely. Hence, the harm reduction approach advocates for drug users to stay safe and healthy regardless of whether they are still doing drugs or of the conditions that they live in.

Q: Are there any resources that you would recommend for people who want to learn more about harm reduction in relation to injection drug use?

FJ: I urge people to read more about this topic. To break the stigma against IDUs, we need more informed people. For those who are interested in learning more, there are some very good resources available on www.unodc.org/India/harmreduction,   www.nacoonline.org/publications/harmreduction and www.aivl.org

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The subject of this post, Francis Joseph, is Programme Officer for Alliance India’s Drug Use & Harm Reduction programmes and is based in New Delhi.

Spanning five countries (India, China, Indonesia, Kenya, and Malaysia), Community Action on Harm Reduction (CAHR) expands harm reduction services to more than 180,000 injecting drug users (IDUs), 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.

CAHR in India 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 project 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.