How Sex Workers, MSMs and Trans People Have Consistently Been Denied Timely HIV/AIDS Treatment

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When the movie “Dallas Buyers’ Club” came to theatres in 2013, it brought back the conversation on HIV/AIDS. It was based on the real life of Ron Woodroof, an HIV positive Texan who began bootlegging antiviral medication in the ‘80s, at the height of the HIV/AIDS epidemic. His small operation actually changed HIV treatment in the US. In 1987, zidovudine became the first available anti-retroviral drug to treat the illness. Since then, medical intervention, globally, has been a changing landscape.

According to Avert studies, between 2010 and 2016, the global number of new HIV infections dropped by a significant 16%. But three years later, in 2016, the number of people living with HIV (PLHIV) rose from 35 million to to 36.7 million. Of that, a significant portion are in India.

A woman has blood drawn from her arm to test for HIV after her husband has begun to show symptoms of the disease.(Photo by Alyssa Banta/Newsmakers)

Since 1996, when the first antiretroviral treatments were introduced in the country, we have been trying to address one of the world’s most deadly ailments. Even today, India has committed to ending the epidemic by 2030. But there are obstacles aplenty.

Back in 2004, the government began providing free antiretroviral drugs to PLHIVs. But, as educationist and activist Vishwa Schoolwalla notes, “the paperwork and government regulations for approval of such treatment cause delay in effective provision of HIV treatment.”

All of this is seriously being watered down by a new HIV bill. Clause 14 (1) of the bill limply says medical help can only be provided “as far as possible”. And the statement has drawn sharp criticism. Tripti Tandon of Lawyers’ Collective says, “[it] gives an opening to the governments to evade any responsibility to treat patients.”

So if you can’t rely on the state for even the first line of HIV/AIDS drugs, what then? Well, be prepared to shell out INR 3,000 for a month’s supply! Many of you reading may be privileged enough to afford these treatments, but does everyone have that luxury? At-risk populations like female sex workers, men who have sex with men (MSM), and trans youth certainly do not.

Economic barriers and discrimination drastically affect one’s access to sexual and reproductive healthcare. “People do not know where to get HIV-AIDS treatment for free or at subsidized rates,” explains Schoolwalla. “Patients have to travel considerable distances to get their treatment because every healthcare center (private or public) does not cater to HIV-AIDS.”

Street-based sex workers, or those who are unattached to community-based organisations, are extremely vulnerable.: two out of five are affected by HIV/AIDS. They often receive no information, forget being able to pay for condoms or treatment. But even access to condoms may not be a deterrent . In a publication by the Interagency Working Group on Key Populations, a young sex worker said: “If we insist, some customer will ask ‘why you are asking me to use condom? Do you have any disease? Better I go to another girl.’” In the interest of her own livelihood, a sex worker may simply have to compromise her health, and, in turn, that of her clients, their partners, future children, and so on and so forth.

The economic barriers, and the risk of transmitting the illness is also true in the case of men who have sex with men (MSM), many of whom are engaged in sex work. But even for those who are not, the threats remain much the same. When Section 377 paints same-sex relations as illicit, trying to access healthcare comes at a serious risk. It’s not just facing homophobia from health professionals. We’re talking about actual arrest.

This combination of stigma and the law affects many transgender PLHIVs too. Another publication by the same Working Group revealed that “transgender people have competing health needs and may prioritize medical treatment related to gender transition, particularly if they perceive that HIV testing or treatment will cost money.”

It is difficult for sex workers to implement safe sex techniques with Indian men who do not want to use condoms. (Photo by Brent Stirton/Getty Images for the GBC)

All three populations appear to be stuck between a rock and a hard place, having to trade-off one ‘safety’ for another, but never truly being granted the right to both. These injustices aren’t the only complications. Something else we need to be aware of are “bridge populations”. The National AIDS Control Organization has identified truck drivers as one of these. As a migrant group, the potential to spread HIV/AIDS is a concern. And it cannot be staunched without some necessary steps like making condoms available at gas stations and eateries, or mandatory health check up by transport companies.

Things have gotten slightly better. Today, 20.9 million HIV positive persons now have access to antiretroviral therapy. Much of it is due to work on the ground. Bharati Dey of the Durbar Mahila Samanwaya Committee has explained that community-led awareness programmes have increased condom use, and decreased the risk of contracting HIV. For the longest time, organizations like the Naz Foundation have worked to empower PLHIVs. And most recently, a multimedia project called Safe Masti launched online, urging people to get themselves tested. In fact, they’ve collaborated with the Karma Centre for Counselling and Wellbeing to provide factual information, as well as pre-test and post-test counselling for PLHIV.

But there are hardly any other centres in India doing this work. The HIV Bill covers discrimination, confidentiality, informed consent and disclosure of HIV status, but completely skips mental health care.

People who have just been diagnosed are at significant risk of committing suicide,” says Karma founder Manavi Khurana. And this isn’t the only thing that makes mental healthcare such a crucial part of treatment. “Efavirenz,” says Schoolwalla, “which is the most commonly available, and cheapest drug used for HIV treatment, causes or aggravates depression.” These overlaps must be managed. But it won’t be easy.

Khurana points out that the infrastructure is lacking: “A lot of HIV positive people are from the lower economic strata, and we don’t have resources in the language that individuals speak.” And much like HIV medication, Khurana notes that counselling too is for the rich. Which, she adds, is in sharp contrast to the US, where free of cost counselling services and group therapy are far more accessible. Not to mention, there is less discrimination on the basis of sexuality and background.

School children use folk dance to spread awareness of AIDS in Vijayawada, India. (Photo by Brent Stirton/Getty Images for the GBC)

It might be nice to think about a Ron Woodroof of our own. But we shouldn’t have to have one. Our government has committed to ensuring universal access to sexual and reproductive health-care services by 2030. And if we want to see HIV intervention to work, we must take these two following steps. First, India needs to finance, recruit, train and retain a capable and enthusiastic health workforce. Second, as the Working Group suggests, we must “involve young people who sell sex meaningfully in the planning, design, implementation, monitoring and evaluation of services suited to their needs in their local contexts.”

Less than 1% of HIV-prevention funding is spent on programmes for sex workers, forget about other vulnerable groups. The Ministry of Health and Family Welfare ought to lead by example, and run programmes for all socially vulnerable PLHIVs.

We’ve got just over a decade to clean up our act, and the clock is ticking. So will 2018 see a vigorous move in this direction?

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An ambassador and trained facilitator under Eco Femme (a social enterprise working towards menstrual health in south India), Sanjina is also an active member of the MHM Collective- India and Menstrual Health Alliance- India. She has conducted Menstrual Health sessions in multiple government schools adopted by Rotary District 3240 as part of their WinS project in rural Bengal. She has also delivered training of trainers on SRHR, gender, sexuality and Menstruation for Tomorrow’s Foundation, Vikramshila Education Resource Society, Nirdhan trust and Micro Finance, Tollygunj Women In Need, Paint It Red in Kolkata.

Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

Saurabh has been associated with YKA as a user and has consistently been writing on the issue MHM and its intersectionality with other issues in the society. Now as an MHM Fellow with YKA, he’s launched the Right to Period campaign, which aims to ensure proper execution of MHM guidelines in Delhi’s schools.

The long-term aim of the campaign is to develop an open culture where menstruation is not treated as a taboo. The campaign also seeks to hold the schools accountable for their responsibilities as an important component in the implementation of MHM policies by making adequate sanitation infrastructure and knowledge of MHM available in school premises.

Read more about his campaign.

Harshita is a psychologist and works to support people with mental health issues, particularly adolescents who are survivors of violence. Associated with the Azadi Foundation in UP, Harshita became an MHM Fellow with YKA, with the aim of promoting better menstrual health.

Her campaign #MeriMarzi aims to promote menstrual health and wellness, hygiene and facilities for female sex workers in UP. She says, “Knowledge about natural body processes is a very basic human right. And for individuals whose occupation is providing sexual services, it becomes even more important.”

Meri Marzi aims to ensure sensitised, non-discriminatory health workers for the needs of female sex workers in the Suraksha Clinics under the UPSACS (Uttar Pradesh State AIDS Control Society) program by creating more dialogues and garnering public support for the cause of sex workers’ menstrual rights. The campaign will also ensure interventions with sex workers to clear misconceptions around overall hygiene management to ensure that results flow both ways.

Read more about her campaign.

MH Fellow Sabna comes with significant experience working with a range of development issues. A co-founder of Project Sakhi Saheli, which aims to combat period poverty and break menstrual taboos, Sabna has, in the past, worked on the issue of menstruation in urban slums of Delhi with women and adolescent girls. She and her team also released MenstraBook, with menstrastories and organised Menstra Tlk in the Delhi School of Social Work to create more conversations on menstruation.

With YKA MHM Fellow Vineet, Sabna launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society. As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Read more about her campaign. 

A student from Delhi School of Social work, Vineet is a part of Project Sakhi Saheli, an initiative by the students of Delhi school of Social Work to create awareness on Menstrual Health and combat Period Poverty. Along with MHM Action Fellow Sabna, Vineet launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society.

As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Find out more about the campaign here.

A native of Bhagalpur district – Bihar, Shalini Jha believes in equal rights for all genders and wants to work for a gender-equal and just society. In the past she’s had a year-long association as a community leader with Haiyya: Organise for Action’s Health Over Stigma campaign. She’s pursuing a Master’s in Literature with Ambedkar University, Delhi and as an MHM Fellow with YKA, recently launched ‘Project अल्हड़ (Alharh)’.

She says, “Bihar is ranked the lowest in India’s SDG Index 2019 for India. Hygienic and comfortable menstruation is a basic human right and sustainable development cannot be ensured if menstruators are deprived of their basic rights.” Project अल्हड़ (Alharh) aims to create a robust sensitised community in Bhagalpur to collectively spread awareness, break the taboo, debunk myths and initiate fearless conversations around menstruation. The campaign aims to reach at least 6000 adolescent girls from government and private schools in Baghalpur district in 2020.

Read more about the campaign here.

A psychologist and co-founder of a mental health NGO called Customize Cognition, Ritika forayed into the space of menstrual health and hygiene, sexual and reproductive healthcare and rights and gender equality as an MHM Fellow with YKA. She says, “The experience of working on MHM/SRHR and gender equality has been an enriching and eye-opening experience. I have learned what’s beneath the surface of the issue, be it awareness, lack of resources or disregard for trans men, who also menstruate.”

The Transmen-ses campaign aims to tackle the issue of silence and disregard for trans men’s menstruation needs, by mobilising gender sensitive health professionals and gender neutral restrooms in Lucknow.

Read more about the campaign here.

A Computer Science engineer by education, Nitisha started her career in the corporate sector, before realising she wanted to work in the development and social justice space. Since then, she has worked with Teach For India and Care India and is from the founding batch of Indian School of Development Management (ISDM), a one of its kind organisation creating leaders for the development sector through its experiential learning post graduate program.

As a Youth Ki Awaaz Menstrual Health Fellow, Nitisha has started Let’s Talk Period, a campaign to mobilise young people to switch to sustainable period products. She says, “80 lakh women in Delhi use non-biodegradable sanitary products, generate 3000 tonnes of menstrual waste, that takes 500-800 years to decompose; which in turn contributes to the health issues of all menstruators, increased burden of waste management on the city and harmful living environment for all citizens.

Let’s Talk Period aims to change this by

Find out more about her campaign here.

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A former Assistant Secretary with the Ministry of Women and Child Development in West Bengal for three months, Lakshmi Bhavya has been championing the cause of menstrual hygiene in her district. By associating herself with the Lalana Campaign, a holistic menstrual hygiene awareness campaign which is conducted by the Anahat NGO, Lakshmi has been slowly breaking taboos when it comes to periods and menstrual hygiene.

A Gender Rights Activist working with the tribal and marginalized communities in india, Srilekha is a PhD scholar working on understanding body and sexuality among tribal girls, to fill the gaps in research around indigenous women and their stories. Srilekha has worked extensively at the grassroots level with community based organisations, through several advocacy initiatives around Gender, Mental Health, Menstrual Hygiene and Sexual and Reproductive Health Rights (SRHR) for the indigenous in Jharkhand, over the last 6 years.

Srilekha has also contributed to sustainable livelihood projects and legal aid programs for survivors of sex trafficking. She has been conducting research based programs on maternal health, mental health, gender based violence, sex and sexuality. Her interest lies in conducting workshops for young people on life skills, feminism, gender and sexuality, trauma, resilience and interpersonal relationships.

A Guwahati-based college student pursuing her Masters in Tata Institute of Social Sciences, Bidisha started the #BleedwithDignity campaign on the technology platform Change.org, demanding that the Government of Assam install
biodegradable sanitary pad vending machines in all government schools across the state. Her petition on Change.org has already gathered support from over 90000 people and continues to grow.

Bidisha was selected in Change.org’s flagship program ‘She Creates Change’ having run successful online advocacy
campaigns, which were widely recognised. Through the #BleedwithDignity campaign; she organised and celebrated World Menstrual Hygiene Day, 2019 in Guwahati, Assam by hosting a wall mural by collaborating with local organisations. The initiative was widely covered by national and local media, and the mural was later inaugurated by the event’s chief guest Commissioner of Guwahati Municipal Corporation (GMC) Debeswar Malakar, IAS.

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