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These Inspirational Real Life Heroes Are Fighting A Deadly Enemy That India Is Facing

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By Lipi Mehta:

When writer Dorothy Parker set out to write ‘The Great American Novel’, she actually found herself in a TB sanatorium in the Swiss mountains. Looking at the condition of the patients around her, she wrote, “TB or not TB, that is the question.” With 2.5 lakh deaths happening in India every year because of this disease, this is perhaps the question we need to answer as well – how can India assure a patient’s journey from ‘TB’ to ‘Not TB’?

Plans and schemes look great on paper and there is no dearth of those when it comes to ending TB in India. But behind every great idea are the people who bring it to fruition. So, while since 1995, the government of India has initiated a TB control programme called DOTS (Directly Observed Treatment, Short-Course), which involves patients taking medicine under direct supervision, the treatment which can last anywhere between 6 months to 2 years is more like an arduous journey where, without support, the patient could be easily demotivated and could give up.

And that, in turn, means that TB will never leave our country.

But how is it that since 1995, 41 million have been treated because of this programme? That’s largely because some people are dedicating their lives to fighting the TB menace in our country where, if the problem is bad in urban areas, it’s even harder to tackle in rural India.

Katie Jordan, who worked with TB control NGO Operation ASHA shares her experience:

“Our team travelled over rivers, through woods, and down small dirt roads in order to reach the villages that Operation ASHA community health workers visit three times each week to identify and treat TB patients. Compounding the sheer distance and rough terrain that needs to be travelled, there are also unique and complex cultures in the rural tribal areas. Thus, instead of sending in workers from outside of the community, Operation ASHA trains and hires villagers to act as community health workers. Community health workers know the terrain, the language, the religion, and the customs. Most importantly, the patients trust them. By hiring local people, Operation ASHA provides respectable, safe jobs, a win-win situation for all involved.”

But things are tricky in our part of the world where many might just pretend that the patients have taken their medicine. This is where ASHA’s unique e-Compliance system comes in. To make sure that the dose has been successfully administered, the device records the electronic fingerprint of both the community health worker and the patient to verify that they are in the same place.

This approach has other benefits too, as Katie herself witnessed:

“The technology gives the community health worker leverage when treating their patients. Instead of just telling patients the reasons why taking their medications will benefit their health, they can point to the machine and say, “if you don’t take your medication, my boss will find out and I won’t be paid.” This tactic can be surprisingly effective for ensuring treatment adherence when the community health worker is the patient’s neighbour.”

From Chandigarh to Chennai, the stories of individuals who go out of their way to provide relief to TB patients are the stuff humanity is made of.

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Paramjeet Kaur. Source: YouTube.

Take Paramjeet Kaur from Chandigarh for instance, who says that she looks after her patients the way she would care for her own children. When she hears of a patient not willing to take their medicine, she personally visits them again and explains why it is a must. She also counsels the family members of her patients and reminds them of how important it is to make someone with TB feel accepted and loved. This counselling of patients and their families is crucial when it comes to TB treatment.

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Meenakshi Sundaram. Source: YouTube.

DOTS provider Meenakshi Sundaram from Chennai travels around 6-7 km every day to give his patients their medicines and educates them about the side effects as well. He does this despite having lost a hand and injuring his foot permanently in a train accident, because as he says, “I can continue this work till my last breath.”

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Bani Kundu. Source: YouTube.

And what about stigma? It is no secret that TB patients are isolated and often ignored when they are suffering, a large reason for thousands in India to not seek treatment. DOTS provider Bani Kundu from Bankura in West Bengal ensures that patient anonymity is maintained. She goes out of her way to meet her patients at a place of their comfort, be it a bus stop or a restaurant, and even carries homemade food for some of her some patients in need. While she wishes that she can fight against the stigma in a stronger way, she says, “I am helping someone regain their health. That’s the biggest source of happiness for me.”

The fight towards #NoMoreTB is a difficult one, with 2 million Indians being affected each year. In this situation, even a single patient’s recovery is nothing less than a brick of hope. With the spirit and strength that hundreds of DOTS providers work, the possibility of us winning this fight seems a bit stronger each day. And it is to each and every one of them that the country owes a huge debt.

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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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