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3 Survivors Provide Crucial Solutions To ‘India’s Most Neglected Health Crisis’

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By Nandita Venkatesan, Saurabh Rane and Deepti Chavan for Survivors Against TB: 

Every minute that you spend reading this article, an Indian will die of TB. India has 2.8 million TB cases – a disease which kills over 400,000 Indians every year. These statistics mean nothing to most people because TB is easily India’s most neglected health crisis. What we fail to notice behind the statistics are human stories of suffering, grit and determination.

From a patient’s perspective, India has failed to control TB. Tuberculosis though easily contracted is cured with difficulty and it is a challenge to survive. As survivors, we can say the purely medical paradigm i.e. to diagnose and treat has failed to address TB in India. The government and doctors fail to understand the social, economic and cultural circumstances in which Indians address TB. It is also critical to understand the way in which those affected by TB interact with the health systems, within their families and communities.

From a survivor’s perspective, overcoming TB takes more than diagnosis and treatment; it requires social, economic and family support, along with counselling and stigma reduction. This is sorely missing in our health systems and our communities.

So how can India comprehensively address TB? It must begin with, listening to the voices of patients and survivors. They will tell you that strong efforts are needed to raise public awareness and reduce stigma. What India desperately needs is a comprehensive awareness campaign to ensure knowledge of all kinds of TB, their symptoms and the need for early diagnosis and treatment.

For instance, we must focus on creating awareness of Extra Pulmonary TB (EP-TB), which remains neglected, and those affected by it suffer from delayed diagnosis and treatment. We need TB survivors as ambassadors at the local and national level through public campaigns. In the end, all stakeholders especially patient groups should have a say in the development of policy and communication strategies.

While most TB affected delay seeking medical help and when they do, they rarely receive a quick and accurate diagnosis. Why? Because the diagnostics we use, are either too expensive or sub-standard. The way to address delayed and inaccurate diagnosis is to provide universal access to free highly reliable TB tests irrespective of whether patients receive care in the public or private sectors.

While addressing diagnosis, India must also address treatment for both drug sensitive and drug resistant TB. India is believed to have close to 100,000 cases of Multi-Drug Resistant (MDR) TB making it a frightening epidemic. This is harder and more expensive to diagnose and treat. The way to address this is by ensuring patients get appropriate treatment for drug-sensitive TB and every Indian who is diagnosed with TB is also tested for drug resistance. No one should have to wait for months for a diagnosis of drug-resistant TB or pay exorbitantly for it.

Apart from providing every TB patient with an upfront Drug Susceptibility Test (DST), to rapidly identify MDR and more severe forms of DR-TB, we must individualise treatment regimens. We need to give patients drugs to which they are not resistant. India also needs to urgently expand access to the new drugs particularly to patients in the private sector with ease to ensure that no patient goes without treatment.

Perhaps what patients need most for improved outcomes of TB treatment is better nutrition and counselling throughout the treatment period. How can a person without food be expected to eat medicines? Or survive horrific side effects without appropriate counselling? We also need to create economic support programs – to support TB patients and their families during the treatment period and to avoid further impoverishment. This has been attempted in Cuba and shown remarkable results in ensuring adherence and reducing catastrophic health expenses.

Yet, most of this is not available in either the public or the private sectors. There exists no partnership between the two to address TB. Close to 70% of all of Indian’s seek care for illnesses including TB in the private sector. We have to treat TB as a national emergency and launch initiatives that can innovatively engage and partner with the private sector to control TB. This government with its focus on technology is best positioned to implement this.

Most policy makers, doctors, program managers will argue that these changes are too many to achieve. However, if they understood how TB destroys an individual and their families – none of this would seem too ambitious. We also have to recognise that TB costs $ 23.7 billion in losses. Hence every rupee spent on TB yields much more in savings.

As TB affected, we were told that our disease was a virtual death sentence. We fought it and survived but not everyone is that fortunate. Why must millions of Indians go through what we did? We must recognise we are sitting on ticking time bomb, the longer we delay action, the harder it will be to defuse TB in India. It’s time to end TB in India.

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About the authors:

Nandita Venkatesan [Journalist, 26, Survivor Extra Pulmonary TB (EPTB)]

Nandita survived EPTB twice within a span of 6 years. She was misdiagnosed and went through numerous surgeries to recover and build a new life as a professional. Her story epitomises the struggle that women go through when surviving TB in India or elsewhere. She lost her hearing as a side-effect due to TB medication.

As a survivor, Nandita speaks out against TB-related stigma and the need for increased awareness about TB. She is also a strong advocate of improved access for TB affected to free diagnosis and treatment. She currently lives in Mumbai with her family and works as a journalist.

Saurabh Rane [Development Professional, 24, Survivor MDR TB]

Saurabh is an MDR TB and borderline XDR TB survivor. Despite being a medical professional he was extensively misdiagnosed and treated inefficiently. He survived numerous side effects but fought TB through resilience and grit substantiated by support from friends and family.

In order to prove that he had triumphed over TB he ran 10 Km race during the treatment even though he had lost half of both his lungs to TB. He also completed a 20,000 ft. trek: one of the hardest in India. He is now an advocate for those affected by TB and writes and speaks on issues of programmatic change, community education, nutrition and economic support for TB affected. He is currently working a healthcare consultant.

Deepti Chavan [Patient Advocate, 32, MDR TB Survivor]

Deepti Chavan is an MDR-TB survivor. She took treatment for six years and underwent two major surgeries to get her affected lung removed. Now, she counsels people affected with TB and talks about her experiences at TB related events. She has also spoken about her experiences on radio, print and TV to inspire patients to fight and never give up. She is now working towards being a patient advocate.

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About Survivors Against TB:

Survivors Against TB is a group of TB survivors who have come together to advocate on key issues around TB in India. Through their experiences of surviving TB and their understanding of the patient experience, they work to reduce stigma, impact policy and create greater awareness around TB. Through advocacy and outreach they aim to create a more inclusive policy and programmes ultimately resulting in more patient-centric care. They also provide support to a patient undergoing treatment through counseling and guidance.

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Image source: Mint/Getty Images
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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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