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.

 __________________________

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.

Are harm reduction strategies working?

Harm reduction services need to be amplified and customised based on community needs.

Harm reduction services need to be amplified and customised based on community needs.

Observed every year on 26th June, International Day Against Drug Abuse and Illicit Trafficking remains focused largely on protecting society from the evils of drugs. There is however a burning need to consider the situation of people who use drugs. To what extent are we as a society enabling drug users either to quit taking drugs or – failing that – to minimize the harmful consequences of their drug use? This is where ‘harm reduction’ comes into play.

In India, harm reduction has generally meant helping people who inject drugs (PWID) reduce the harmful consequences of their injecting practices – notably the risk of HIV infection. Harm reduction has been adopted as the official policy of Government of India, though there has been criticism about the manner in which it has been done. Under the National AIDS Control Programme, preventing HIV among PWID  is accomplished by delivering a package of services to them that include, access to clean needles and syringes (Needle Syringe Exchange Programmes, or NSEP), Opioid Substitution Therapy (OST), peer-education for adopting safer behaviours, primary medical care and referral for other health-care needs. This package of interventions, collectively called ‘Targeted Interventions’ (TIs) is typically delivered by NGOs working with PWID. The NGOs are financially and technically supported by the Government, and it is estimated that more than 80% of estimated 186,000 PWID in India are covered by such TIs.

However, we need to consider the variations in the injecting patterns of PWID in a vast and heterogeneous country like India. PWID from north-east India would have very different needs as compared to PWID from say, Punjab, who would need different services as compared to PWID from, say, Kerala.

Indeed, nationwide research studies have been able to document the variations and similarities in the drug use patterns of PWID in different parts of India. One such study looked at behaviours and practices of about 1,000 PWID from 11 different states of India. Another soon to be released study, by the same author in collaboration with India HIV/AIDS Alliance, involved specifically interviewing PWID from four states – Bihar, Haryana¸ Jammu and Uttarakhand titled ‘Drug Use Patterns among Clients Receiving Services from Targeted Interventions for People Who Inject Drugs.’

Such studies reveal very important facts about the situation of PWID in India. One clear, unambiguous finding has been that across the country, the injecting pattern in India is characterized by injecting ‘opioid’ group of drugs. There may be variations in the choice of opioid drug injected by PWID – from D-propoxyphene or pure heroin in the north-eastern states, to buprenorphine or pentazocine or street heroin (‘brown sugar’ or ‘smack’) in other states of the country. But in medical terms, almost all the PWID can be diagnosed as having suffering from ‘opioid dependence disorder,’ and intervention strategies must take this fact into account.

Another issue of concern which emerges from this available data is the progression and continuation of risky practices by PWID. On an average a typical person who injects drugs in this country begins his/her drug use career by using legal and common substance like tobacco or alcohol in the early teen years. By late teen years, he/she begins using illegal drugs, though through a non-injecting route (orally or through smoking). It is only after spending about five to six years as a non-injecting drug user, he/she begins injecting the drugs – often under the persuasion and influence of his peers. Soon as he/she begins injecting, he/she starts sharing needles and syringes, putting himself/herself and his/her peers at the risk of HIV. And here comes the interesting part. Only after having spent about four to five years as a person who injects drugs does he/she begin receiving harm reduction services from the TI. Thus, for many crucial years in their drug use careers, PWIDs remain out of the network of any services. Clearly, we are not ‘catching them young’!

A Hypothetical time-line of Drug Use Career of a typical IDU in India sdp blog insert 1Adopted from Ambekar (2012)

Our data also show that even after coming in contact of harm reduction services, a certain proportion of PWID continue to share their injections. In a nationwide study, almost a quarter of PWIDs reported sharing their injections in last three months, despite receiving services for an average of about two years.

Thus two crucial issues which emerge are (a) we are reaching the population quite late, when a behavioural pattern appears to have been well established putting them at risk; and (b) our services are probably not geared to ensure zero sharing of injections. No wonder then, that recent research studies show that there is practically no reduction in HIV or HBV or HCV infection among people who inject drugs, despite provision of harm reduction services.

Does this mean we need a course correction? Do we need to think of innovative approaches and alternate models of service delivery? Do we need to enhance and intensify the existing programmes? A combination of all of the above? Worth thinking about on this year’s International Day Against Drug Abuse and Illicit Trafficking which is also the Global Day of Action for the Support. Don’t Punish campaign which promotes the human rights of people who use drugs and advocates against the harms of criminalising drug use.

___________________________

The author of this Post, Dr. Atul Ambekar is Additional Professor of Psychiatry at the National Drug Dependence Treatment Centre (NDDTC), AIIMS, New Delhi. He is also member of the Strategic Advisory Group to United Nations of HIV and IDU and a member of the Technical Resource Group on IDU for the Department of AIDS Control, Government of India. Views expressed are his own.

Alliance India 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.

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.

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

People who inject drugs face widespread discrimination, physical violence, hostility and harassment that limits their access to lifesaving health services. (Photo by Prashant Panjiar for India HIV/AIDS Alliance)

People who inject drugs face widespread discrimination, physical violence, hostility and harassment that limits their access to lifesaving health services. (Photo by Prashant Panjiar for India HIV/AIDS Alliance)

Born in a poor family in a remote district of Haryana, Paul (name changed) learnt from childhood to be by himself. He was dragged to work at the age of 10. It was here, copying older boys, he got into the habit of smoking ganja (cannabis). Soon his peers influenced him enough to experiment with stronger substances like smack (a heroin derivative). As his cravings increased, he was soon hooked on injecting pharmaceutical drugs, unaware that sharing needles and syringes could make him vulnerable to HIV.

Paul’s story is shared by many people who inject drugs (PWID) in India. There are thousands in India, who feel helpless because drugs control their bodies and minds. Addiction compels them to keep ‘using’ despite horrendous physical and mental consequences and unaware of their increased risk for HIV. It is estimated that the HIV prevalence amongst 180,000 PWID in India is approximately 7.1%.

Their vulnerability 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 fuel the HIV epidemic in the country.

PWIDs are often assumed to be HIV-positive and refused treatment when clinical care is needed. There have been many instances of PWID being denied services at public healthcare facilities and instead getting arrested and suffering police brutality.

“When I tested HIV-positive, hell broke on me. Going for treatment was scary as there was so much stigma attached with being a PWID,” recalls Paul.

Sensitization efforts by India HIV/AIDS Alliance’s Hridaya programme with healthcare facilities and psychosocial interventions with PWID have helped community members living with HIV avail stigma-free antiretroviral treatment. Hridaya follows a harm reduction approach, which – as the name suggests – aims to reduce the harm associated with injecting drug use, such as vulnerability to HIV and Hepatitis C infection, rather than trying to eliminate drug use per se.

“Thanks to Hridaya, I am now comfortable with myself, comfortable with the fact that I am positive,” says Paul.

This year the global theme of World AIDS Day is “Getting to Zero”: zero new infections; zero AIDS-related deaths; and zero discrimination. For the first two to happen, eliminating discrimination is essential. Building rapport with PWID and gaining their trust are essential in harm reduction programming and are the first steps towards getting to zero with PWID.

__________________________

The author of this post, Francis Joseph, is Programme Officer: Drug Use & Harm Reduction at India HIV/AIDS Alliance 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 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.

This blog was published on The Alternative on 2nd December 2013. 

A Long Way to Zero… | World AIDS Day 2013

(Photo by Peter Caton for India HIV/AIDS Alliance)

(Photo by Peter Caton for India HIV/AIDS Alliance)

“Getting to zero” is the theme of this year’s World AIDS Day. It is an ambitious goal, to be sure. Three goals, in fact. Three zeros. Zero new HIV infections. Zero AIDS deaths. Zero stigma and discrimination. Are we now so close to declaring victory? Are we really on a path to an AIDS-free world? Is the end of AIDS on the horizon?

On one hand, we have never been better positioned to achieve such goals. We have good epidemiological data. We know where the epidemic thrives. We know who are most at risk, and we have the tools to reduce their vulnerability. For those infected, we have treatment.

Yet mastering this epidemic remains elusive. Why does there still seem to be zero chance that we will achieve any of UNAIDS’ zero targets anytime soon? Although it’s no longer popular to say so, AIDS remains exceptional. As a virus, it has proved remarkably resourceful, outwitting scientists and keeping a vaccine or cure out of reach.

But for all its microscopic muscularity, HIV is still winning because we’re letting it win. Those most at risk — sex workers, men who have sex with men, people who inject drugs, transgenders and hijras — remain on the margins, socially stigmatized and victimized by legal discrimination. People living with HIV bear a daily burden of society’s cruelty and inaction.

Don’t get me wrong. Things are better than they’ve ever been, but better isn’t good enough. Our tools and knowledge can only stifle this epidemic if they are marshaled to the task. Government coordination must be matched with community mobilization and sustained in collaboration with civil society. National treasuries, donor governments, corporate houses and private citizens alike need to pitch in to support these efforts.

This World AIDS Day, even as we appreciate progress in India and elsewhere, we should not lose our momentum or let crumble the foundation that has been built in the quarter century since the first World AIDS Day in 1988. The path to zero is still long, even if the destination is clear.

__________________________

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

This blog was republished on One World South Asia on 2nd December 2013. 

What Difference Does Discrimination Make? Reflections for World AIDS Day 2013

Lord Fowler during his visit to Lakshya Trust in Surat, Gujarat. (Photo: India HIV/AIDS Alliance)

Lord Fowler during his visit to Lakshya Trust in Surat, Gujarat. (Photo: India HIV/AIDS Alliance)

I have just returned from a visit to India to see what is being done in tackling HIV and AIDS. Back at the start of the epidemic in 1986 I was health minister in Britain. We carried out a very high profile public education campaign using television, radio, poster sites to get the message through. We sent leaflets to every home in the country. Remember at this time there was no treatment. If you contracted HIV it was so often a death sentence.

But of course we were a relatively small country. India has a massive population of well over a billion and a vast area to cover. It is enormous credit to those early public health activists and to their successors on what has been accomplished. The creation of the National AIDS Control Organisation in itself was a massive achievement. Unlike some countries I have visited over the last 18 months there has been close cooperation with civil society organisations like India HIV/AIDS Alliance and many others. India put prevention first and the figures tell the story.

There has not been the explosion we have seen in Sub Saharan Africa where in one country almost a quarter of the population are infected. There may be two million people in India with HIV but compared with the population, prevalence is remarkably low. If you take injecting drug users then India has followed the sensible policy of providing clean needles. This should eliminate the spread of the infection by dirty needles being shared.

Does this mean then that all the problems in India have been solved? Of course not. No country can claim that. We still have a major problem of discrimination and stigma when it comes to  sexual minorities. Drug users are often treated with contempt as are transgender people who face particular prejudice. Sex workers continue to be exploited – although HIV transmission has fallen due to the vastly increased use of condoms. Men who have sex with men are still widely condemned.

And what difference does such discrimination make? It means that many men and women are unwilling to come forward for testing. They fear what the impact may be on their lives if it is known that they are positive. They fear the reaction in their families, in their communities and at work. And the effect is this: They are undiagnosed and continue to spread the virus. HIV and AIDS continue to increase. Deaths mount.

Of course this is not just a problem in India. It is a problem in every country in the world that I have visited. On this World AIDS Day we should vow to fight the discrimination and the stigma – and make a new effort to get people to test and get on treatment as it becomes more and more available. HIV is no longer a death sentence but the earlier a man or woman goes into treatment the longer life will be.

__________________________

The author of this blog, Lord Norman Fowler, was a member of Margaret Thatcher’s Cabinet and served as chairman of the Conservative Party under John Major between 1992 and 1994. He was instrumental in drawing public attention to the dangers of AIDS in Britain. He is the author of A Political Suicide: The Conservatives’ Voyage into the Wilderness and is currently writing a book on the global AIDS epidemic. Hosted by Alliance India, Lord Fowler recently visited New Delhi and Surat, Gujarat, to learn more about how this country has risen to the challenge of HIV.

Realising ART Adherence among People Who Inject Drugs in India

Hridaya educates PWID living with HIV about positive prevention, emphasizing the importance of adhering to ART treatment regimens. (Photo by Prashant Panjiar for India HIV/AIDS Alliance)

Hridaya educates PWID living with HIV about positive prevention, emphasizing the importance of adhering to ART treatment regimens. (Photo by Prashant Panjiar for India HIV/AIDS Alliance)

Adherence to antiretroviral therapy (ART) is strongly correlated with HIV viral suppression, reduced rates of resistance, an increase in survival, and improved quality of life. Yet there are numerous cases in India of people living with HIV who exist in co-morbid conditions: dependent on substances but dropping their ART regime due to societal stigma and discrimination or to a lack of understanding about the need to adhere to treatment.

Lamyanba (name changed) from Imphal has been injecting drugs since 1989. When he tested positive for HIV recently, he had a dangerously low CD4 count of 19 and was immediately put on ART. He responded favourably to treatment, and his CD4 count increased to 600 in a span of six months. When his health improved, he decided to stop the treatment without consulting a doctor or service provider. Lamyanba’s decision is unfortunately too common.

Recognizing that people who inject drugs (PWID) living with HIV frequently drop out from ART treatment, the Hridaya programme is undertaking active monitoring to address this problem. A tracking tool has been developed to monitor a client’s routine diagnostics. The tool indicates the dates for ART follow-ups, and an outreach worker contacts clients to remind them of their follow-up appointments. Outreach workers also keep a check on client CD4 counts.

Supported by Government of Netherlands, Hridaya works in the states of Bihar, Haryana, Uttarakhand, Jammu and Manipur to strengthen harm reduction interventions at state and district levels. Aiming to cover all PWID in these states, the programme focuses on the unmet harm reduction needs of vulnerable drug-using populations and complements HIV prevention activities in each state under India’s National AIDS Control Programme.

Hridaya routinely educates PWID living with HIV about positive prevention focusing on the value of adhering to ART treatment. The programme team works with clients to identify barriers to accessing ART treatment and advises on the need for strict adherence to the treatment regime. In Imphal, Hridaya aims to keep 95 percent of clients on treatment and minimize loss-to-follow-up. With this support, Lamyanba is back on ART, leading a healthy positive life.

__________________________

The author of this blog, Roshan Ningthoujam, is programme manager for Hridaya at Social Awareness Service Organisation (SASO) in Manipur, India.

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.