World Hepatitis Day 2013: Making Hepatitis C a Priority

Sixteen million people inject drugs worldwide. Three million live with HIV, and two-thirds of them live with Hepatitis C. (Photo by Francis Joseph for India HIV/AIDS Alliance)

A dear friend of mine was struggling as a single mother, working two jobs and balancing drug use. To make things simpler, she quit the jobs and started working from home. Unfortunately, her drug use turned out to be more problematic than anticipated. Her situation was further complicated when she was diagnosed as positive for Hepatitis C, a viral disease that leads to the inflammation of the liver and related complications.

With no medical insurance, she faced a financial challenge to cover the six-month long treatment. At first, she got contributions from family and friends and then a loan, and lastly she sold her jewellery. She recovered only to be hit with the virus again. This time her condition deteriorated so quickly that she was not able to make it through a second round of treatment. Only half of those who are treated actually recover. My friend’s is just one of the many stories of people struggling with Hepatitis C.

Hepatitis C represents a huge public health problem in India and globally. According to the World Health Organization about 150 million people are chronically infected with the Hepatitis C virus, and more than 350,000 people die every year from Hepatitis C-related liver diseases. The Hepatitis C virus is more infectious than HIV. An estimated 10–12 million people in India are infected with Hepatitis C, including 50 percent of people who inject drugs (PWID) nationally and 90 percent of PWID in the northeast. Left untreated, Hepatitis C can lead to liver cirrhosis, liver cancer or liver failure.

Hepatitis C is especially of concern for those co-infected with HIV, as several studies have shown that HIV-Hepatitis C co-infection leads to increased rates of disease progression. PWID are especially vulnerable to infection by both HIV and Hepatitis C; co-infection rates are as high as 93% among PWID in Manipur. However, unlike first- and now second-line HIV treatment, which is available to people living with HIV who need it in India, Hepatitis C treatment is not available in government hospitals largely due to its high cost, and health programmes for PWID typically do not screen patients for Hepatitis C due to the unavailability of treatment. Consequently, this results in high morbidity and mortality among PWID.

To address this concern, our Government of the Netherlands-supported Hridaya programme disseminates information on Hepatitis C prevention through outreach and counselling sessions at drop-in centers (DICs) in 36 sites in four states: Bihar, Jammu, Haryana and Uttarakhand. The programme also identifies clients and refers them for testing. Those found to be Hepatitis C-positive are further educated on self-care and positive prevention. The programme’s outreach team works with spouses and families of PWID, explaining Hepatitis C risk and prevention in the context of injecting drug use.

To address the growing problem of HIV-Hepatitis C co-infection among women who inject drugs, our Elton John AIDS Foundation-funded Chanura Kol project has initiated Hepatitis C interventions. Women enrolled in the project are educated about transmission risks, prevention strategies, and the importance of testing.

With both programmes, Alliance India is working to ensure that Hepatitis C prevention education and treatment literacy become a priority for PWID and a core part of this country’s efforts to improve the lives and health of PWID.

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

With funding from European Commission, the Asia Action on Harm Reduction programme 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. The three-year programme in the beginning will primarily engage with PWID and local partners in Bihar, Haryana, Uttarakhand, Delhi and Manipur and  gradually extend its reach across India.

Registering for a Healthy Life: Chanura Kol Helps Women Who Inject Drugs

A registration book lies open in front of a woman who has just used a clean syringe provided by a Drop In Centre in Manipur. The needle is being washed and will be discarded in one of the trash cans that can be seen in the background. Photo by Prashant Panjiar for India HIV/AIDS Alliance

Chochong was married at the young age of 15. Unable to cope with her husband’s abuse, she was tempted to try drugs. It was an easy way for her to overcome the suffering she endured every day. In 2010, Chochong met a field worker at a hotspot in Imphal who motivated her to register with Alliance India’s Chanura Kol project. “I was hesitant at first and scared thinking, ‘What will they do?’ Their guidance has helped me lead a healthier life.”

Chochong is not alone. Since 2010, 720 women who inject drugs (WWID) have registered with Chanura Kol to avail a range of services provided by the project. Registered WWID have received psychological and social support through counseling services from Chanura Kol. They have also received information about HIV-related services, as their risk of infection is high, because of injecting drug use and sex work, which many depend on as their primary source of income. Services also include free health checkups with the provision of basic healthcare and treatment support for those living with HIV.

In addition, WWID registered with the project receive income generation support from activities like making pickles, selling dry fish, catering and supplying clothes. This new income can play an essential role in preventing relapse into drug use. Chanura Kol aims to ensure that WWID receive essential support and care services which can prevent them from relapsing and protect them from HIV and other blood-borne viruses like Hepatitis C.

“I have a hope that if I continue to avail services of Chanura Kol, I will soon be able to meet my son whom I left back because of this habit,” Chochong says.

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

India HIV/AIDS Alliance in partnership with SASO, implements the Chanura Kol project in Manipur. Funded by the Elton John AIDS Foundation, Chanura Kol was initiated in 2010 and serves to expand interventions to reduce drug relapse among female injecting drug users. Based on a holistic and sustainable approach, Chanura Kol aims to address the root causes of vulnerability and the primary causes of relapse post-detoxification for women who inject drugs in India’s north-eastern state of Manipur, many of whom are also sex workers. Chanura Kol provides these women with long-term shelter, creates opportunities for income generation outside of sex work, and encourages the rebuilding of family relationships.

Detox and a New Life: Supporting Options for Women Who Inject Drugs in Manipur

Post detoxification, women are encouraged to learn new vocations. In this photograph, a woman at the Chanura Kol short stay home learns to make frankincense sticks. (Photo by Prashant Panjiar for India HIV/AIDS Alliance)

Alliance India’s Chanura Kol project offers a range of harm reduction services for women who inject drugs to help them lead a better life. Detoxification is the most important option in this strategy.Since the inception of the project in 2010, 113 women have completed detoxification to wean themselves off drugs.

Detoxification reduces withdrawal symptoms and helps an addicted person adjust to living without the effects of opiates or other drugs. Alliance India’s partner in the project, Social Awareness Service Organisation (SASO), provides this option either at the homes of female injecting drug users in situations where they have supportive family members or in a clinical setting when drug users lack family support.

Once detox is completed, the process of rehabilitation begins. Chanura Kol encourages the rebuilding of strained family relationships during the reintegration period. As a key part of rehabilitation, these women are helped to learn new vocations to earn a living. They often receive loans from self-help groups established by their peers to support these efforts to start small businesses.

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India HIV/AIDS Alliance in partnership with SASO, implements the Chanura Kol project in Manipur. Funded by the Elton John AIDS Foundation, Chanura Kol was initiated in 2010 and serves to expand interventions to reduce drug relapse among female injecting drug users. Based on a holistic and sustainable approach, Chanura Kol aims to address the root causes of vulnerability and the primary causes of relapse post-detoxification for women who inject drugs in India’s north-eastern state of Manipur, many of whom are also sex workers. Chanura Kol provides these women with long-term shelter, creates opportunities for income generation outside of sex work, and encourages the rebuilding of family relationships.

Coffee, Noodles and Harm Reduction: A Menu to Reach Women Who Use Drugs in Manipur

A counsellor advises a client at the Chanura Kol drop-in centre in Imphal. (Photo © Prashant Panjiar for India HIV/AIDS Alliance)

In an effort to increase uptake of essential harm reduction services in Manipur, India, the Chanura Kol project did more than expand its service menu to reach women who inject drugs.

Early on, the Chanura Kol team realised that many women who inject drugs neither have the time nor inclination to stop by the project’s drop-in centre (DIC) in Imphal for counselling services or to meet a doctor. To encourage these women to avail these services, team members initiated special days when free coffee and the popular dish of chow mein noodles were served to visitors.

Soon, Chanura Kol’s ‘Chow Mein & Coffee Days’ gained popularity among community members, and the DIC saw more and more women stopping by and speaking with the doctor and counsellor on duty.

The women who visit are offered a range of services in addition to counselling: needle or syringe exchanges, free condoms, and health checks-up, including medicine for basic health conditions. Additionally, linkages to reproductive health and HIV-related care and clinic-based detoxification therapy are available along with overdose prevention education and Naloxone for overdose-related emergencies.

By offering the hospitality of a simple meal, the DIC has become a more welcoming and comfortable place for the women who use drugs that Chanura Kol is trying to reach. Many of them now refer to the DIC as a second home where they cannot only access health and harm reduction services but also build supportive connections with their peers.

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India HIV/AIDS Alliance in partnership with SASO, implements the Chanura Kol project in Manipur. Funded by the Elton John AIDS Foundation, Chanura Kol was initiated in 2010 and serves to expand interventions to reduce drug relapse among female injecting drug users. Based on a holistic and sustainable approach, Chanura Kol aims to address the root causes of vulnerability and the primary causes of relapse post-detoxification for women who inject drugs in India’s north-eastern state of Manipur, many of whom are also sex workers. Chanura Kol provides these women with long-term shelter, creates opportunities for income generation outside of sex work, and encourages the rebuilding of family relationships.

Uniting Against Discrimination: Women form advocacy groups to respond to cases of violence

Building on the sense of community that exists within this peer group, Chanura Kol has created advocacy groups to deal with challenges faced by female injecting drug users. Photographer: Prashant Panjiar

Alliance India understands the power of community participation and engagement. In partnership with the Manipur-based local NGO, Social Awareness Service Organisation (SASO), the Chanura Kol project has established four Core Advocacy Groups to help women who inject drugs, many of whom are sex workers.

Each advocacy group, comprised of 10-15 members consisting of female injecting drug users, sex workers or their pimps, serves to address stigma and discrimination faced by women who inject drugs as well the frequently reported cases of violence experienced by them. Group members have received training on advocacy and documentation and, since the establishment of the groups in early 2011, have responded close to 100 cases of violence, harassment and extortion by women who inject drugs.

The reported incidents that these advocacy groups have responded to included domestic violence and harassment by sexual partners and security forces. The latter are notorious for extorting money particularly from female injecting drug users who engage in sex work. Each of the reported incidents was responded to within 48 hours during which time the advocacy groups provided support to those affected and their families.

Group members also held sensitization and advocacy meetings with those involved in perpetrating the violence. Although these advocacy groups were initiated last year, SASO has implemented the creation of support groups since 2007 in keeping with its belief that these groups play an important role in garnering community involvement and family support, facets that are integral to the recovery of vulnerable women who inject drugs.

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India HIV/AIDS Alliance in partnership with SASO, implements the Chanura Kol project in Manipur. Funded by the Elton John AIDS Foundation, the project serves to expand interventions to decrease HIV transmission and reduce drug relapse among female injection drug users (FIDUs).

Women Out Loud: New UNAIDS/UNWomen Publication Cites Our Chanura Kol Project

UNAIDS and UN Women recently released Women Out Loud, a new report on women living with HIV and the key role that they play in ending the epidemic. A UNAIDS feature on the document’s release notes the following:

In a new report, entitled Women Out Loud, UNAIDS explores the impact of HIV on women and the instrumental role women living with the virus are playing to end AIDS. It includes the latest data and commentary from some of the leading advocates on women and HIV.

The report includes the voices of some 30 women living with HIV who have given their personal insights into how the epidemic is affecting women and on how women are actively working to reduce the spread and impact of AIDS.

HIV is continuing to have a disproportionate effect on the lives of women. It is still the leading cause of death for women of reproductive age, and gender inequalities and women’s rights violations are persistent in rendering women and girls more vulnerable to HIV and preventing them from accessing essential HIV services…

Marginalised women remain the most impacted by HIV

Sex workers and people who use drugs are particularly vulnerable to HIV. When sex is exchanged for money or drugs, women often exert little influence over a partner’s condom use. Female sex workers are 13.5 times more likely to be living with HIV than other women. Some countries reported an HIV prevalence of more than 20% among female sex workers in capital cities. Studies conducted in nine European Union countries have indicated on average a 50% higher prevalence of HIV among women who inject drugs than in men who inject drugs.

On page 21 of the report in the chapter on people who use drugs, the following point is made: “Women who use drugs are widely reported to experience disproportionate levels of stigma and discrimination, often compounded during pregnancy, and as mothers.” One of the three references for this observation is In the Shadows, the baseline findings report from our Chanura Kol project.

India HIV/AIDS Alliance is grateful to UNAIDS and UN Women for this citation of our work. Many thanks to the Chanura Kol team and particularly to our implementing partners, SASO and Shalom, for their many contributions to the report and to the project overall. To read more about our baseline findings, click here or on the report cover below.

Chanura Kol is funded by the Elton John AIDS Foundation and serves to expand interventions to decrease HIV transmission and reduce drug relapse among women who inject drugs. Based on a holistic and sustainable approach, the project was initiated in 2010 to address the root causes of vulnerability and the primary causes of relapse post-detoxification for women who inject drugs in India’s northeastern state of Manipur, many of whom are also sex workers. Chanura Kol provides these women with long-term shelter, creates opportunities for income generation outside of sex work, and helps them rebuild family relationships.

Chanura Kol is one of a handful of efforts in the region to address the distinct needs of women who inject drugs and reduce their vulnerability to HIV. To learn more, please see a recent slide show about the project:

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HIV positive women who inject drugs provided with emergency support

A nurse at a Drop In Centre medically examining female injecting drug
user in Imphal. Photographer: Prashant Panjiar

Over the last year, Chanura Kol has reached out to more than hundred women who inject drugs, many of whom are HIV positive and all of whom were in need of general and emergency care.  Chanura Kol offered the women essential care and support services. This included emergency support such as providing them with food and medication for sexually transmitted infections, which a large proportion of the women were at risk as their primary source of income was sex work. In addition to this, women were tested for HIV and Hepatitis C.

Chanura Kol also filed cases on behalf of sex workers who were the victims of violence by either their pimps, clients or police officers. Physical and sexual violence are common occurrences in the lives of these women, a number of whom are also forced to consume alcohol and drugs by their clients. In a number of cases, this marks the beginning of their downward spiral into drug addiction. With little or no support to help them out, women, who have been successful in refraining from drug use, go back to sex work where they face the added risk of relapsing into drug addiction. In addition to the women that the Chanura Kol project has reached out till now, the programme aims to provide a holistic range of services to help 550 more women who inject drugs in Manipur by the end of three years.

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The India HIV/AIDS Alliance in partnership with SASO, implements the Chanura Kol project in Manipur. Funded by the Elton John AIDS Foundation, Chanura Kol was initiated in 2010 and serves to expand interventions to reduce drug relapse among female injecting drug users. Based on a holistic and sustainable approach, Chanura Kol aims to address the root causes of vulnerability and the primary causes of relapse post-detoxification for women who inject drugs in India’s Northeastern state of Manipur, many of whom are also sex workers. Chanura Kol provides these women with long-term shelter, creates opportunities for income generation outside of sex work, and encourages the rebuilding of family relationships.

Mark your calendars for AIDS 2012 sessions on People Who Use Drugs!

India HIV/AIDS Alliance has been working closely with partners worldwide to make sure that the voices of People Who Use Drugs (PWUD) are heard at the upcoming International AIDS Conference in Washington, DC. If you are attending, we encourage you to participate in the events below.

In addition, amfAR and the International AIDS Society have organised an official AIDS 2012 pre-conference—The Twin Epidemics of HIV and Drug Use: Innovative Strategies for Healthy Communities—that will be held on Friday, July 20 in Washington DC. Bringing together experts, professions and policy-makers from the fields of policing, drug policy and HIV care, the preconference will strive to deepen understanding of the ways that enforcement, legal reform and public health can work together to stop the HIV epidemic among PWUD.

All events below take place at the Walter E. Washington Convention Center, Washington, DC, unless otherwise indicated.

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Alliance Exhibition Booth (#102)
Come visit booth #102 to learn about the Alliance’s work in India and around the world, pick up copies of our publications and find out more about the Alliance Regional Technical Support Hubs.
All week, Exhibition Hall, 10:00am-6:30pm

Satellite Session
Reaching Key Populations through SRH/HIV Integration: Opportunities for Impact
Organised by India HIV/AIDS Alliance and chaired by UNAIDS, this session will present programming experiences highlighting the challenges and successful approaches used in integrated programmes specific to key populations, including PWUD. Panelists include the Alliance’s Sunita Grote, USAID’s Clancy Broxton, CAMNAFAW’s Nathalie Nkoume, and NEPHAK’s Rahab Mwaniki.
Sunday, July 22, Global Village Session Room 1, 3:45-5:45pm

Poster Presentation
Addressing vulnerabilities of women who inject drugs: A community-based intervention model towards a holistic response to improve health and reduce HIV transmission among women who inject drugs in Manipur, India (MOPE569)
Monday, July 23, Exhibition Hall, Level 2, 12:30-2:30pm

Panel Discussion
Living Harm Reduction: Lessons Learned from Three Continents
Organised by IDPC and the Alliance, the panel will discuss the work of Community Action on Harm Reduction (CAHR) and will include India HIV/AIDS Alliance’s Charanjit Sharma, Program Manager for Hridaya, the CAHR program in India.
Tuesday, July 24, Global Village Harm Reduction Zone, 4:30-6:00pm

Oral Poster Session
Drugs, Sex and HIV
India HIV/AIDS Alliance’s Kaushik Biswas will present findings from the Hridaya study on injecting practices and sexual behavior of People Who Inject Drugs (PWID) in three Indian states. (TUPDD0204)
Tuesday, July 24, Mini Room 10, 1:00-2:00pm

Panel Discussion
Criminalise Hate Not HIV: Why the HIV/AIDS community should support the decriminalisation of drug use.
Organised by INPUD, HRI, IPPF, IFRC and the Alliance, this panel is chaired by Prasada Rao, the UN Secretary-General’s Special Envoy for HIV in Asia and the Pacific and an Alliance Trustee.
Wednesday, July 25, Global Village Harm Reduction Zone, 11:00am-12:00noon

Poster Presentation
What’s harming harm reduction? Reducing HIV vulnerability among women who inject drugs in South Asia (WEPE319)
Wednesday, July 25, Exhibition Hall, Level 2, 12:30-2:30pm

Poster Presentation
Beyond Heroin: Patterns of drug choice diversity among People Who Inject Drugs (PWID) in three Indian states: Findings from the Hridaya baseline study (WEPE302)
Wednesday, July 25, Exhibition Hall, Level 2, 12:30-2:30pm

Poster Presentation
Identifying quality-of-life priorities for People Who Inject Drugs (PWID): Findings from the Hridaya baseline study in three Indian states (WEPE318)
Wednesday, July 25, Exhibition Hall, Level 2, 12:30-2:30pm

Poster Presentation
Reaching PWUD in SRH/HIV integration: Recommendations from a global intervention review to identify strategies to increase the responsiveness and relevance of integrated programming to the sexual and reproductive health and rights (SRHR) needs of high-risk groups (WEPE320)
Wednesday, July 25, Exhibition Hall, Level 2, 12:30-2:30pm

Oral Poster Session
Expanding Covering and Quality: Approaches to Scaling-Up
Alliance’s Sunita Grote will present recommendations on reaching Key Populations in SRH/HIV integration, including guidance on services for sex workers, MSM, transgenders, PWUD and PLHIV. (WEPDE0102)
Wednesday, July 25, Mini Room 3, 1:00-2:00pm

Regional Session:  Asia and the Pacific
On the Edge of the Cliff: Debating the Challenges of the Response
Panelists include India HIV/AIDS Alliance’s Charanjit Sharma, Program Manager for Hridaya, the Community Action on Harm Reduction program in India.
Thursday, July 26, Session Room 5, 2:40-4:00pm

Press Conference
Turning the Tide: Addressing SRH Needs of Key Populations in AIDS Programs
This session will include remarks by India HIV/AIDS Alliance partner Daxa Patel, the Board Secretary, Gujarat State Network of PLHIV, and by Sunita Grote from the Alliance.
Thursday, July 26, Media Center, Press Conference Room 2, 3:30-4:00pm

If you have any questions, please contact us at info@allianceindia.org. You can also view our AIDS 2012 Roadmap for all India HIV/AIDS Alliance sessions at the International AIDS Conference. We hope to see you at AIDS 2012!

The Money Lender’s Daughter

The Chanura Kol team ensures that women undergoing rehabilitation receive a great deal of trust and respect from each other and from staff members at Chanura Kol’s short stay home. In this photo,  a women at the short stay home hugs another resident.  (Photographer: Prashant Panjiar)

Sheena (name changed) is 36 years old and resides in Imphal East which is located in the drug riddled state of Manipur in northeastern India. Sheena is the youngest of four siblings, all of whom have spent the last seven years watching their sister endure the severe turmoil that accompanies heroin addiction. Her wealthy family background is where Sheena’s story of addiction begins.

The daughter of a prosperous money lender, Sheena was the perfect target for her first husband who used her family’s wealth to support his heroin addiction. He introduced Sheena to heroin and over the next three years, her life fell apart as she grew addicted to the drug. Ultimately, her husband left her when they realized that Sheena was infertile and could not bear children. In a desperate attempt to escape the heartbreak that followed, Sheena ran away from her home to North AOC, a place in Imphal which is notorious for easily accessible drugs and is a hub for sex work.

In her new home, Sheena met her second partner, Sandeep (name changed), who was also a heroin addict. Over the next three years, Sheena and Sandeep used heroin frequently, a habit that left them drowning in debt. Sheena remembers working as a rag picker, and sleeping on the streets with Sandeep because they could not afford accommodation of any other kind. Sheena also recounts the financial desperation that forced them to steal money from their neighbours so that they could pay for their next high, something that Sheena says she is embarrassed to confess especially since the stealing continued even after the couple was caught numerous times and publicly humiliated.

Sheena cannot remember the specific point at which she realized that she had hit rock bottom but she does remember feeling a growing sense of urgency that motivated her to seek help. She also tried to convince Sandeep to enter a rehabilitation programme but soon realized that he had no desire to change his life.

With her mother’s support, Sheena became one of the first women to enter Chanura Kol’s short stay home where she went through detoxification treatment and also received counseling, economic support and vocational training. Sheena says that the support that she received from the staff members at the short stay home and from the other women who were also going through detoxification treatment was invaluable to her progress. Sheena has stayed off drugs since she left the short stay home. Her partner, Sandeep, unfortunately, passed away while she was in the rehabilitation programme.

Sheena says that she feels like a stronger person emotionally, psychologically and physically, and is currently trying to help a friend who is addicted to heroin seek rehabilitation. Sheena says that, for the first time in a long time, she is excited about her future.

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The India HIV/AIDS Alliance in partnership with SASO, implements the Chanura Kol project in Manipur. This project is funded by the Elton John AIDS Foundation and serves to expand interventions to decrease HIV transmission and reduce drug relapse among female injection drug users (FIDUs).

Listening to the Needs of Female Injecting Drug Users: Housing for children enables more FIDUs to enrol in short stay home

A resident at Chanura Kol’s short stay home checks her phone for messages. (Photographer: Prashant Panjiar)

When female injecting drug users (FIDUs) in Manipur cited a lack of accommodation for their children as being a major deterrent to enrolling in Chanura Kol’s detox programme, the Chanura Kol team responded quickly. Team members piloted a short-stay home which provides housing to two children five years of age or younger for each woman enrolled in the detox programme.

Toys, space for playing and child appropriate nutrition is provided at the Drop in Centre (DIC) where women who inject drugs undergo detox treatment. For further care, children of FIDUs, who are enrolled at the short stay home, are referred to government-supported Aaanganwadi Centres (AWCs) which offer existing pre-school, nutrition and health services.

The short-stay home provides a safe and supportive space to help women reintegrate into their families and society. So far, 45 women have accessed the services offered at the Chanura Kol short-stay home. 41 women have been provided vocational training, and 16 women have initiated income generating activities with Chanura Kol’s support.

This short stay home exemplifies the flexibility with which the Chanura Kol team operates, and highlights the programme’s belief in customizing solutions based on the needs of the women it seeks to help.

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The India HIV/AIDS Alliance in partnership with SASO, implements the Chanura Kol project in Manipur. This project is funded by the Elton John AIDS Foundation and serves to expand interventions to decrease HIV transmission and reduce drug relapse among female injection drug users (FIDUs).