Advocating for Cervical Cancer Testing for Women Living With HIV

It is essential that the public health system ensures the availability and accessibility to testing and treatment of cervical cancer for women living with HIV, who are five times more likely to be affected by cervical cancer.

The Koshish Project recently held an advocacy meeting to discuss frequent non-compliance with the National AIDS Control Organisation’s (NACO) Revised Technical Guidelines on ‘Laboratory Monitoring for Patients at ART Centre/LAC/LAC Plus’ to test women on ART for cervical cancer, a disease that is five times more likely to affect women living with HIV.

Initiated by Alliance India’s Koshish partners Vasavya Mahila Mandala (VMM) and the Telegu Network of People Living with HIV/AIDS (TNP+), the state-level advocacy meeting highlighted the need for the public health system to ensure the availability and accessibility to testing and treatment for cervical cancer among women living with HIV (WLHIV). 

The meeting took place at the Andhra Pradesh State AIDS Control Society (APSACS) where VMM and TNP+ were joined by 23 district-level PLHIV networks to present a memorandum to the Project Director of APSACS.  They advocated for the urgent need for public healthcare facilities in Andhra Pradesh to implement NACO’s ART guidelines to improve the quality of life for WLHIV vulnerable to cervical cancer.

Dr. B. Jayamma, Additional Project Director, APSACS, chaired the meeting and, in her closing address, she assured the participants that the NACO revised technical guidelines on ART would be reviewed and SACS would take immediate action to implement the guidelines.  

Koshish held a similar meeting in Tamil Nadu, at which J.S. Malliga from the Cancer Institute carried out a presentation demonstrating the high level of vulnerability to cervical cancer experienced by WHLIV. This meeting also saw the release of a baseline study conducted by India HIV/AIDS Alliance, Tamil Nadu Positive Women Network and Palmyrah Workers Development Society for the Koshish Project. The study found that PLHIV felt that their SRH rights were being violated, with ten percent of PLHIV surveyed for the study stating that they were unaware of where they could go to receive information related to sexual health, contraceptives, and related care and treatment.

These meetings highlight  the urgency with which PLHIV need to be informed about their SRH rights and the SRH services available to them, and the necessity for cervical cancer testing to be a part of these services for WHLIV.

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India HIV/AIDS Alliance works closely with PLHIV in India through its Koshish Project which strengthens civil society organizations and networks that represent and work with PLHIV and other marginalized groups, such as MSM, transgenders, sex workers and IDUs, to effectively advocate for policies to improve the sexual and reproductive health and rights of PLHIV in India. This project is funded by the European Commission and is implemented in partnership with MAMTA, PWDS, VMM and CHETNA, along with state-level networks for PLHIV in Maharashtra, Tamil Nadu, Andhra Pradesh and Gujarat.

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Confidentiality: A Health and Human Rights Issue for PLHIV

Community action lies at the core of the Koshish project, which advocates for policies to improve the SRH and rights of PLHIV in India, and strives to ensure that PLHIV are treated with respect and dignity.

There is nothing more angering than the thought that the stigma faced by people living with HIV (PLHIV) is prevalent in the very medical institutions that are supposed to care for them. Take, for example, the situation where numerous cases of PLHIV had their HIV status published on the front page of their medical history, making confidential information available to anyone who glanced at their file. Even before the news of their status spread, the patients had been blatantly discriminated against and marginalised by caretakers and medical staff.  Unfortunately, this example of human rights violations was a nightmare experienced by PLHIV who were admitted to the District Government Hospital of Amravati in Maharashtra.

To reverse this trend, the Koshish Project saw its members from Amravati’s neighbouring district join hands to advocate for change. Community action has always been at the core of the Koshish Project’s work, and through structured community consultations, team members collected factual evidence and discussed appropriate steps to take. The newly formed coalition, consisting of training support officers, advocacy officers and field workers, submitted a joint memorandum to the Head of Department at the Amravati hospital appealing for appropriate action. The Koshish team works on the principle that in order for stigma to be challenged in the long run, it is important for the government to legally sanction anti-discriminatory practices.

Their efforts were rewarded when the Head of Department soon issued a circular stating that it was mandatory to discontinue the practise of disclosing patients’ HIV status on the front page of their medical case history. Responding to this welcome action, a 32-year-old HIV patient at the hospital expressed how this circular had affected him – “Now I go to government hospitals like anyone else and access services without any stigma. I feel more empowered when the right to disclose my HIV status lies with me and not others. “

This case also unravelled the need to organise trainings to sensitize district doctors as a step towards reducing stigma. Koshish team members have already taken an opinion poll of district doctors in Amravati district to assess their current knowledge of and attitude towards HIV/AIDS. The next step will be for team members to use this information to create training programmes that challenge HIV-related stigma, which has become a serious health as well as a civil rights issue.

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Alliance India works closely with PLHIV in India through its Koshish project which aims to strengthened civil society organizations and networks that represent and work with PLHIV and other marginalized groups, such as MSM, transgenders, sex workers and IDUs, to effectively advocate for policies to improve the sexual and reproductive health and rights of PLHIV in India. This project is funded by the European 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.

In the Midst of Sisters, a New Bud Blossoms

The Chanura Kol project realises the importance of creating a sense of closeness and community between the women it works with such as those pictured in this photo. A number of women feel that the knowledge, and emotional and moral support they have received from their newfound community of sisters has proven to be a great source of strength for them. (Photo : Prashant Panjiar)

Anouba Mayol means ‘new bud’ in Meitei, the official language of my home state, Manipur. Anouba Mayol is also the name of the support group I belong to. I am 29 years old, and like the other eight women in my support group, I am living with HIV and was widowed due to drug use, HIV and AIDS.

When I met my husband a few years ago, I was struck by how handsome he was. He worked in a small family owned photo-studio, and we were very happy in each other’s company. About a year after we got married, he started complaining of frequent chest pains. One day, he left home with his family members and I later learned they had taken him to Guwahati to get treated for his chest pain. It was hard to shake off the feeling that I wasn’t getting the whole story.

I finally persuaded one of my husband’s close friends to tell me what he knew. He swore me to secrecy and revealed that my husband was HIV positive and had been injecting drugs for a while. The news absolutely crushed me but I didn’t disclose what I knew to my husband or my family. Eventually, my husband passed away and his family blamed me for his death. They tortured and threatened me, and forced me to move back to my parents’ home. I haven’t visited my husband’s home since then.

Life dealt me an even larger blow when my daughter and I tested positive for HIV. Depression seemed to take over my life and I couldn’t sleep at night from an overwhelming fear of dying. During this time, I was approached by a peer educator from the Social Awareness Service Organisation (SASO) who counseled and assured me that the organization would provide any support that my daughter or I needed. It was during this time that I felt motivated to join Anouba Mayol, a support group where all the members learned from each other’s life experiences and gained information on sexually transmitted infections, prevention of parent to child transmission, and the importance of positive living. Gradually, as our group members gained a stronger sense of confidence and self-reliance, we started holding meetings by ourselves with no outreach worker or peer educator present.

With the support of SASO, our group also initiated a few income generation activities. I was given INR 1,000 to make silk thread. Each member of our group also contributes INR 10 each month to the group fund, which is used for loans on a rotational basis.

The change that I have experienced in my life because of my support group has been invaluable – we are like a group of sisters who are always there for each other in times of need. I now feel empowered and will do everything in my power to lead a healthy and long life especially for my daughter who also receives nutritional and educational support from SASO.

Anouba Mayol – I feel like the name of our support group symbolizes the new sense of hope that my daughter and I have been gifted with. After a very long time, I feel happy when I think about what lies ahead for both of us.

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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).

Sharing Experiences Across Borders: Alliance India Hosts International Horizontal Learning Exchange on MSM and Transgender Programming and Advocacy

Participants in the Horizontal Learning Exchange on MSM and Transgender Programming and Advocacy with Alliance India team members in New Delhi

Last week, Alliance India hosted a four day information sharing and learning exchange for Alliance partner organisations from Mongolia, Myanmar, Kenya and Indonesia. Comprised of discussions, workshops and visits to Pehchan field sites, the Horizontal Learning Exchange on MSM and Transgender Programming and Advocacy provided a rare opportunity for its international participants to share experiences, ask questions and discuss the challenges that they have come across in their own cultural contexts of working with MSM, transgender and hijra (MTH) groups. Discussions centred around a range of issues including those related to capacity building, addressing and overcoming stigma and discrimination experienced by the MTH community, and the methods of working with government partners on MTH and HIV programming.

Day one consisted of oral presentations and workshops such as the one moderated by Ashok Row Kavi in which participants learnt about the history of the lesbian, gay, bisexual and transgender (LGBT) movement in India and the sexual and gender differences that exist here and in other participating countries. These sessions, coupled with an informative film screening by Sridhar Rangayan on the social impact of the media’s representation of the LGBT community, led to a thought-provoking discourse on issues of gender, sexual identities and behaviour, and the factors that influence and shape them. These discussions offered participants the opportunity to compare the similarities and differences between how these factors impact the HIV response and the solidarity of the LGBT communities in the unique context of their own countries.

The learning exchange sessions also examined sexual health and HIV prevention-related issues for the MTH community in India as well as in other participating countries. Day two started off by looking at Pehchan’s implementation model and the emphasis that the programme places on community mobilisation, capacity building and collaboration with the National AIDS Control Programme. Once participating countries had shared their experiences in the areas of programming and community mobilisation, they discussed how they could learn from each other about identifying good practices, and the opportunities and barriers to developing effective HIV/STI programming for MSM and transgender communities.

Field visits and direct interaction with key populations enriched participants’ understanding of the Pehchan project. Participants had the opportunity to visit Community Advisory Boards and regional offices set up by Pehchan. On day three, a site visit to one of Pehchan’s community-based organisation (CBO) for MSM, Mitra Trust, offered participants the opportunity to directly learn about CBO development and governance, resource and community mobilisation, and outreach strategies for MSM. Another site visit to a Pehchan Transgender CBO, Kinnar Bharati, enriched participants’ knowledge about the specific issues and challenges – including stigma and discrimination, and its effect on access to essential services – experienced by transgender and hijra communities in India. Participants were also treated to a cultural event organised by the CBO members, which ended day three on an entertaining note. Participants spent the following day sharing their thoughts and feedback on the site visits and ended the Horizontal Learning Exchange by discussing the way forward for each of the countries to work effectively with MSM and transgender communities. 

The organisations that participated in this learning exhange consisted of the Kenya AIDS NGOs Consortium (KANCO), Rumah Cemara, the National AIDS Foundation Mangolia, and Alliance Myanmar. All the participating organisations, which are Linking Organisations with the International HIV/AIDS Alliance, support and develop programmes run by other non-governmental organisations and CBOs in their own countries.

The Horizontal Learning Exchange offered participants an exceptional opportunity to gain invaluable information based on each other’s experiences. Participants left the learning exchange excited to take their own next steps while staying abreast with future plans of other participants. We hope that the learning exchange paved the way for similar information sharing meets to take place in the future, and are excited to see how participants use their newfound knowledge in their own corners of the globe to continue building a world where no one dies of HIV.

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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.

Creating Change One Peer Group at a Time

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

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

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

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

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

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

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

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

It Takes Two: The role of sensitizing partners in the fight against drug-use driven HIV

Hridaya’s outreach workers meet frequently with people who inject drugs to ensure that they are provided with essential harm reduction services and their families are offered the support and services they require.

The excruciating pain Sameera (name changed) experienced in her abdomen came out of the blue. Unable to afford the doctor’s fee to treat the ailment, she resorted to home remedies. She finally told her husband, Raymond (name changed), when her condition worsened, but she knew he wouldn’t be of much help. Sameera had recently realized, after three years into their marriage, that Raymond was dependent on drugs and had been injecting drugs for a number of years.

She learned that Raymond had started with brown sugar (an opium derivative), but had later switched to injecting pharmaceutical combinations. That explained why he never stuck to any job, and had, at times, even resorted to petty crimes. To make ends meet, Sameera had started to do odd jobs, such as washing dishes or doing household chores. She tried dissuading her husband from taking drugs, but his habit was a hard one to break. Feelings of desolation, anguish and stress increased the discord between the couple and, now, with her paralyzing pain, Sameera felt even more helpless and hopeless.

What Sameera didn’t know was that Raymond had been approached by a local NGO that provided free needles, syringes, condoms, and advice on safer injecting practices and safe sex to injecting drug users like himself. The NGO was implementing the Hridaya Project, which aims to strengthen the HIV response amongst people who inject drugs (PWID) in three states in India including Sameera and Raymond’s home state of Uttarakhand. The programme builds the capacity of service providers and makes harm reduction programmes more gender-responsive. Hridaya also serves to improve access to health services, and advocates for the rights of injecting drug users.

A female outreach worker from the Hridaya Project had kept in touch with Raymond. Fortunately, it didn’t take long for Raymond to trust her since he recognised that the outreach worker was trained and possessed essential skills and knowledge about his condition. She also seemed sensitive towards his drug use and for his concern for Sameera’s health. Raymond learned that the Hridaya Project had an exclusive service component for the spouses or partners of drug users, which provides outreach services to them, empowers them through peer support groups, and increases their access to sexual and reproductive health and legal rights.

Though a bit hesitant at first, Raymond invited the outreach worker to his home where she talked to Sameera about issues related to her husband’s addiction. She also addressed Sameera’s sexual and reproductive health concerns, which included her recent abdominal pain, and informed Sameera about how to avail of medical treatment from the nearest district hospital. To help Sameera overcome her inhibitions about seeing a doctor, the outreach worker accompanied Sameera on each of her visits to the doctor regarding her gynecological concerns.

Sameera was very grateful to the outreach worker and the Hridaya Project for helping her get treated and empowering her with more knowledge.  She is now aware of her sexual and reproductive health needs, knows how to protect herself from HIV, and is also much more informed about harm reduction and her husband’s health needs. Drug use is a compelling psychological disorder and it is with love, care and compassion that Sameera can help Raymond get out of it, a fact that she now understands. With her newfound knowledge and support, Sameera is optimistic that her relationship with Raymond and their life together will continue to change for the better.

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The author of this post, Francis Joseph, is Programme Officer for the Drug Use & Harm Reduction programmes of  India HIV/AIDS Alliance, New Delhi.

Spanning five countries (China, India, 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. 

In India, CAHR is called Hridaya and is implemented by Alliance India 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.

 

Listening to the voices of communities to get to the heart of change

Structured community consultations by Koshish (Programme of Alliance India) have led to the formation of state level advocacy coalitions in Gujarat, Maharashtra, Tamil Nadu and Andhra Pradesh.
(Photo © Prashant Panjiar for India HIV/AIDS Alliance)

The social challenges in understanding and promoting the sexual reproductive health and rights (SRHR) of people living with HIV (PLHIV) are numerous. These include the social stigma and discrimination against PLHIV, limited accessibility to and availability of essential SRHR services, and the lack of a comprehensive approach to the SRHR needs of PLHIV. Bringing these issues to the attention of concerned stakeholders requires concerted advocacy efforts both at the community level and at a larger, more visible scale.

Leading this wave of change is Parivartaan, a Maharashtra based state level advocacy coalition consisting of 20 civil society organisations (CSOs). Parivartaan advocates for improved sexual reproductive health programmes and policies for PLHIV and key populations, as an initiative under the Koshish project.

Parivartaan’s state level advocacy agenda reflects priorities identified by the community. In the first year of the project, Parivartaan held community consultations in five implementing districts of Maharashtra and consulted PLHIV and key population members to identify their unmet sexual reproductive health needs. These essential consultations revealed a range of very common but highly impactful issues.

Most common among these issues was the inaccessibility to maternal health care services available at primary health centres. This  can prove to be life threatening especially when pregnant women living with HIV (WLHIV) are referred to civil hospitals for delivery. The distance and cost of the services, compounded by other factors such as stigma from medical service providers, non-availabilty of medicines and a lack of skilled medical doctors, increases their inaccessibility to necessary maternal services which, in turn, increases the likelihood of maternal death.

Parivartaan’s consultations also shed light on another area – the vulnerability of WLHIV to cervical cancer. Since pap smear tests are not available at primary health centres, the cancer can go undetected in WLHIV.

Parivartaan will continue to advocate for change so that every pregnant WLHIV can undergo a C-section delivery at her primary health centre and all WLHIV registered in ART centres can avail of the pap smear test facility.

Through its committed work with key populations, Parivartaan promotes Koshish’s belief that empowerment and partnership form core elements of effective advocacy. Koshish depends on mechanisms like feedback and community consultations with diverse district based community organizations to form the foundation of all its initiatives. Following that principle, Parivartaan’s work ensures that the voices of community members and the reailities that they experience everyday lie at the heart of its state level advocacy agenda.

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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 project which aims to strengthened civil society organizations and networks that represent and work with PLHIV and other marginalized groups, such as MSM, transgenders, sex workers and IDUs, to effectively advocate for policies to improve the sexual and reproductive health and rights of PLHIV in India. This project is funded by the European 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.