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Secrecy, Lies And Deception: Tackling The Hidden ‘Side Effects’ Of HIV

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By Aina Valldaura and Felita Viegas:

Mina Kumar during her visit to Lakshmi’s house. © Aina Valldaura/RDT

“Do you want us to close the door?”

“No, better not. The neighbours might suspect and they will eavesdrop.”

We are in a small house in the silk district of Hindupur, a city situated on the border of Karnataka and Andhra Pradesh. The house has only one room and a single bed, which Lakshmi* (38) and Narasimha* (42) share with their two children, Preeti* (15) and Praveen* (18). Four buckets and a closet are the only elements that stand out in the room. The family sustain themselves by producing silk threads.

It is 11 AM. Lakshmi and her husband are waiting for Lalitha Kumar*, the outreach worker of Rural Development Trust (RDT), who visits them monthly since she and her husband were diagnosed with HIV. The goal of outreach workers like Lalitha is to ensure adherence to medication, check the health status and resolve queries, as well as provide moral and emotional support.

Not just governments, but community-based organisations play a crucial role in addressing the social and economic consequences of a virus that affects 37,9 million people worldwide. 

According to the National Aids Control Organisation (NACO), over 21 lakh people were estimated to be living with HIV in 2017, of which Andhra Pradesh ranks second. This is the state that RDT mainly works in, an NGO that runs a Hospital for Infectious Diseases (HID). This centre provides free first and second-line antiretroviral treatment, after being recognised as an ART+ Center, by the Andhra Pradesh State Aids Control Society (APSACS), NACO and it is one of the referral centres for HIV/AIDS and TB in Andhra Pradesh.

RDT’s applies a holistic approach regarding HIV/AIDS, by not only providing medical treatment but also at the grassroots through a network of social and outreach workers. Working from within the communities has been proved to be, in India and worldwide, one of the most effective ways to improve the adherence to treatment and tackle the stigma still associated with it.

Lalitha Kumar has been following up with the family since they reached RDT Hospital a few years ago. She was the first person with HIV that Lakshmi encountered and the only one, besides her doctor, with whom she can talk freely, share her fears and doubts. “Before my diagnosis, I did not know anything about the disease. I heard about it in the TV but I never thought it could happen to me”, Lakshmi she adds while fidgeting with the ARV medicine bottle.

Although there has been a decline in recent years, almost 27% of the total AIDS-related deaths in India occurred in Andhra Pradesh or Telangana, according to NACO’s India HIV Estimations 2017 report. Sex with non-regular partners, especially in men, low condom use, trafficking of girls and women, frequent migration and a large number population of truck drivers are some of the factors that explain the high prevalence rate of HIV in both Telugu states

6,156 persons have been admitted in HID Hospital during 2018-2019 ©Nagappa/RDT

A sudden silence falls in the room when Preeti, the youngest daughter of the couple, enters the house.  She is unaware of her parents “problem”, as Lakshmi calls it.  When she leaves, we resume our conversation. Sudden silences, whispers, keywords and hidden medicines have been part of their daily lives for years.

However, their eldest son, already 18, knows about the situation of his parents. He paid a heavy price. He had to stop studying when he was 16 in order to support the family, at the time when his father was diagnosed with HIV and tuberculosis. Lakshmi was taking care of him in the hospital. At that time, she still did not know that she had also acquired the virus.

The impact of HIV/AIDS goes beyond health as it has social and economic consequences, specifically for poor and marginalised groups. Frequent medical visits affect the economically backward, especially those who depend on daily wages to survive. HIV therapy is provided for free in government institutions but they can have side effects, and the lack of proper nutrition and the cost of travelling to the clinics can drastically destabilise their already fragile economic situation.

When the neighbours or the head of the silk workshop, where Lakshmi and her husband work 12 hours a day, ask them why they go to the doctor so often, the answer is always the same: “My husband has TB.” HIV is a forbidden word. “They would throw us out of the house, the village and work. It would be our end”, says Lakshmi.

Before leaving the neighbourhood, we accompany Lalitha to visit some other families. They are what she calls ‘cover visits’ so that nobody suspects, nobody knows the purpose of her visits. “A lack of discretion can ruin their life,” says Mina. “Secrecy, lies, deception are the other side effects of this disease and these are rarely treated,” she adds.

This is where the work of community-based organisations become pivotal. Outreach workers and counsellors like Lalitha, help people living with HIV, not only access good-quality health care, but also to ensure the HIV stigma does not spoil their lives.

“Somebody showed me that HIV does not mean death. I am just trying to do the same,” says Lalitha before we bid goodbye to her.

*These names and identifying details have been changed to protect the privacy of individuals.

This article has been written by Aina Valldaura and Felita Viegas, development communications professionals at Rural Development Trust based in Anantapur (Andhra Pradesh).

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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.

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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.

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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.

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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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