New Advocacy to Address Cervical Cancer in Women Living with HIV

Early detection of cervical cancer can help WLHIV live longer and more productive lives. (Photo by Prashant Panjiar for India HIV/AIDS Alliance)

Early detection of cervical cancer can help WLHIV live longer and more productive lives. (Photo by Prashant Panjiar for India HIV/AIDS Alliance)

Alliance India’s Koshish programme advocates for policies and strategies on sexual and reproductive health (SRH) and rights for people living with HIV (PLHIV) in India. The programme is implemented in Maharashtra, Tamil Nadu, Andhra Pradesh and Gujarat.

During community consultations with PLHIV in these four states, the Koshish team noticed that women living with HIV (WLHIV) had low awareness of cervical cancer and seldom go for testing. HIV-infected women with advanced immunosuppression (CD4 count < 200 cells/µL) are particularly vulnerable to infection with human papillomavirus (HPV) that leads to cervical cancer.

As the availability of ART has increased, it has given greater hope to WLHIV to live healthier and longer lives. With improved survival, it has become even more imperative to address cervical cancer risk as a priority. Early detection of cervical cancer is possible through a Pap smear test. While not available at primary health centres, the test should be available at every government district hospital’s gynecological departments. Unfortunately, access is limited due to non-availability of kits or lack of trained lab technicians. Typically WLHIV are referred for the test only if doctors think the woman is vulnerable, basing their decision on certain symptoms.

HIV programming needs to integrate Pap smear testing into routine care. Koshish has been actively pushing for regular Pap smear test for WLHIV at civil hospitals. Our partners in Maharashtra, Mamta and the Maharashtra Network of People Living with HIV/AIDS (NMP+) have been successful in motivating Pap smear testing in five implementing districts, Nagpur, Amravati, Kolhapur, Ahmed Nagar and Thane.

In Ahmed Nagar, the team organises a health camp on the first and third Saturday of every month. In these camps, 25 women are screened for cervical cancer. In Thane, the civil surgeon has arranged for a monthly camp for 30 women. The camps in Kolhapur have begun and are being organised on Tuesday and Saturday, while in Nagpur the camps are being successfully held with support from the Indian Cancer Society. In Amravati district, the civil surgeon has issued a circular instructing routine Pap smear testing for WLHIV. Of the WHLIV tested for cervical cancer so far, nearly 10% have tested positive.

The risk of cervical cancer remains high in developing countries due to a lack of prevention and screening programmes. Under Koshish, partners have already started advocacy with decision-makers at State AIDS Control Societies to make annual Pap smear testing a mandatory part of the care for every WLHIV over 30 years of age who is on ART. Data collected from each state will support national level advocacy with decisional-makers at India’s National Health Mission and the National AIDS Control Organisation to ensure that prevention of cervical cancer among WLHIV is a priority. Koshish is committed to empowering PLHIV in India with advocacy tools to promote policies and strategies to improve their lives and build them as the natural leaders of these efforts.

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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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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)

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.

Confronting Quackery, Demanding Care: India’s Hijras Seek Access to Sex Reassignment Surgery Services

Friendly attitudes and responsive services by hospitals can help transgender patients be comfortable and speak about their health concerns. (Photo by Peter Caton for India HIV/AIDS Alliance)

Friendly attitudes and responsive services by hospitals can help transgender patients be comfortable and speak about their health concerns. (Photo by Peter Caton for India HIV/AIDS Alliance)

Malika (her name changed) remembers feeling helpless when a government hospital refused to treat her for a painful and dangerous infection that had resulted from her sex reassignment surgery (SRS). Malika is a hijra and her story is not unique. Many others in her community sadly face similar problems.

In India, hijras have a long and remarkable history, spanning 4,500 years. They are mentioned in ancient religious texts as symbols of dignity and courage. Yet modern Indian society fails to offer them respect or treat them with even basic human dignity. With limited livelihood options, most hijras turn to sex work, begging or other professions that offer them a meagre salary.

With limited resources, many hijras turn to quacks for SRS services since most of them are unable to afford the high rates charged by private clinics. Without national standards for SRS, most of these surgeries are legally ambiguous and performed in miserable conditions by ill-trained surgeons. In Malika’s case, the ‘clinic’ turned out to be a house without proper lighting, surgical facilities or even a recovery bed. If Malika had known and understood the risks, she would not have travelled some 600 kilometres from her hometown Kolkata in West Bengal to the state of Bihar for the operation.

Whether hijras are operated on by quacks or in more expensive private clinics, they tend to experience the same lack of physical and psychological care that is essential after SRS. Happy to accept fees for the surgery itself, doctors fail to provide their patients with appropriate pre- and post-operative counselling or checkups following surgery.

When Malika felt the intense pain that racked her body and realised that she was suffering from a severe urological infection caused by the surgery, she sought help at a government hospital. Both transgender and HIV-positive status, she was refused a hospital bed and any of the care she urgently needed.

On hearing about Malika’s situation, team members from the Global Fund-supported Pehchan programme organised meetings with the project director of the West Bengal State AIDS Programme & Control Society (WBSACS) and with doctors at two hospitals, including the one that had turned Malika away. They also met with members of the press to raise awareness about Malika’s story. The WBSACS project director wrote Malika a support letter, as did the West Bengal health minister. Armed with these letters, Malika underwent treatment at the hospital that had initially turned her away.

After two months recuperating, Malika was discharged from the hospital. Seeing Malika’s resilience and the bold way she handled her situation, the Gokhale Road Bandhan, a community-based organisation that is a sub-sub-recipient partner of Pehchan, offered Malika a job as an outreach worker. “The job has not only helped me deal with my financial instability but has also instilled a sense of self-confidence and self-esteem especially since many of my peers abandoned me because of my HIV-positive status,” says Malika.

Malika’s story reveals the mistreatment that our country’s hijra community experiences at the hands of doctors and the health system. Progress is slow and often only as a result of significant advocacy by community organisations. While we have our own health priorities such as SRS, India’s hijras and transgenders have the same right to health as any other citizen, and the government must act to protect our lives, provide access to care, and ensure the fulfilment of our full rights. Our community cannot be silent!

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The author of this post, Simran Shaikh, is Programme Officer: Pehchan.

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.

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. 

Three Tiers of Oversight: Accountability, Ownership & Programme Governance under Pehchan

Members of the hijra community in Chennai meet regularly to share information, experiences and discuss issues that are important to them. (Photo by Prashant Panjiar for India HIV/AIDS Alliance)

Members of the hijra community in Chennai meet regularly to share information, experiences and discuss issues that are important to them. (Photo by Prashant Panjiar for India HIV/AIDS Alliance)

In order to ensure transparent and ethical programme governance, the Pehchan team has established a three-tier system guided by stakeholders across a wide-ranging spectrum, comprising representation from the MSM, transgender and hijra (MTH) communities, people living with HIV/AIDS, state and national governments, other NGOs and bi- and multi-lateral organisations. Involving a range of stakeholders inculcates ownership, essential to programme sustainability after the funding ends.

At the regional level, Pehchan’s beneficiary voices are captured through Community Advisory Boards (CABs), which have been developed in six regions in India. Each CAB enables the creation of linkages between implementing partners, state governments, and the communities that the programme serves. The purpose of these CAB is to guide programme direction, resolve conflicts as they arise, and ensure the programme runs ethically while remainimg attuned to real community needs.

At the state level, State Oversight Committees (SOCs), located in each of the 17 Pehchan implementation states, serve as the interface between Pehchan and the State AIDS Control Societies (SACS). This committee provides oversight and technical guidance and consists of members from the SACS, Pehchan’s implementing partners, and Pehchan’s Community Based Organisations (CBOs).

At the national level, the Programme Advisory Body (PAB), which is chaired by the National AIDS Control Organisation with membership from the World Bank, UNDP, DFID, UNAIDS, and the Pehchan consortium, ensures smooth, technically-sound programme implementation in coordination with the priorities of the National AIDS Control Programme. Through this holistic three-tier governance system, Pehchan continues to ensure accountability to its key stakeholders and increases programme ownership.

Read more about Pehchan here

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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.