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The 6 Year Long Fight Against “India’s Ticking Time Bomb” – A TB Survivor’s Story

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By Chapal Mehra:

Deepti was 16 when she first started feeling sick. She could not stop coughing. At first she thought it was just normal viral cough, but despite medication, her cough never really stopped. The doctor advised a chest x-ray, and it took her more than a month to get diagnosed with TB. Her family could not believe it and had never imagined that she could have this disease.

Her medication continued but didn’t help. After a few months her doctor informed that a part of her left lung had decayed and hence surgery was required. This was because of a more dangerous form of TB called Multidrug-resistant TB. Her parents were confused and had no clue as to what it meant. Life changed for the worse after that with endless medicines and injections.

Finally, after 6 years of fighting the disease she was finally cured.

Surviving TB wasn’t without challenges and doubts. Yet, Deepti was lucky because she had family support and was eventually able to get the appropriate treatment. Barring some people, everyone stood by her and never discriminated against her. However, millions of Indians are not and they continue to suffer without appropriate diagnosis and treatment.

This is Deepti’s story:

Undoubtedly, TB has become India’s biggest heath crisis. Our country has the highest TB burden globally, with close to 2.2 million new cases each year. Though preventable and treatable, TB kills a 1000 Indians everyday and 3 lakh Indians each year. Most prevalent among the 15-54 age group, it also impacts household income and acerbates poverty by pushing families into debt. The annual costs of TB to India stand at USD 23.7 billion.

Over the last few years, India has been facing an epidemic of drug resistant TB (DR -TB). In 2012, cases of Extremely Drug-Resistant TB (XXDR-TB) were reported in Mumbai. The treatment for DR -TB is extremely long and expensive with an exceedingly poor cure rate. DR TB is nothing short of a death sentence for the poor and vulnerable.

But India’s response to this crisis has been woefully inadequate. By some estimates, close to a million patients remain undiagnosed and untreated, falling somewhere between the overburdened public sector and exploitative private sector. Recognizing the urgent need to prioritize TB, this World TB Day, a group of concerned and eminent citizens wrote an open letter to Prime Minister Narendra Modi, urging him to make TB control a priority in the nation, terming it as a national crisis. The letter’s signatories include prominent citizens such as industrialist Adi Godrej, scientist M S Swaminathan and actor Aamir Khan, who also hosted a path breaking episode on TB in Satyamev Jayate last year.

The letter is accompanied by a set of recommendations drafted by a group consisting of doctors, civil society organizations (CSOs), epidemiologists and social scientists identifying urgent actions necessary to improve TB control in India. These recommendations are in the areas of public awareness, diagnosis, treatment, drug resistance, information systems and private sector engagement.

The recommendations appeal that India must provide free and accurate diagnosis as well as appropriate treatment to every single Indian regardless of whether they seek care in the public or private sectors. The recommendations also suggest that the government needs to provide all TB patients with an upfront Drug Susceptibility Test, to rapidly identify MDR and more severe forms of DR-TB. Moreover, experts suggest that instead of giving a standardized regimen, we need to individualize treatment regimens, choosing only drugs to which we know TB bacteria are sensitive to. The government must also consider introducing, under controlled conditions, new drugs that have the potential for curing the most resistant TB strains.

The key focus areas of these recommendations are prevention, community engagement and empowerment. These, the experts suggest, can be addressed through comprehensive multi-media awareness campaigns to ensure awareness of TB, community engagement and empowerment programs to help fight stigma.

Perhaps the most significant of these suggestions is that the government must actively and effectively engage the private sector. TB in India will never be controlled without participation from the private sector since more than 70% of all TB patients first seek care in the private sector only. The letter suggests learning from experiments currently underway in India where the local city governments have transformed how TB is diagnosed and treated, addressing the crisis upfront.

It also urges the government to recognize the economic and social dimensions of TB and to provide nutrition supplements for all patients with low body weight or those who are below the poverty line. It should also create economic support programs – to support TB patients and their families during treatment period, to avoid further impoverishment.

While the letter is possibly the most comprehensive and detailed set or recommendations on TB, it will have little resonance until sufficient political attention is paid to this health crisis at the highest levels. Politicians continue to unaware of the magnitude of this disease or its implications. Hopefully, the government will take heed and hopefully we can begin to address the crisis that TB is. Until then, it continues to remain India’s silent killer.

Deepti says “I genuinely believe that TB is India’s ticking time. There need to be proper testing facilities where each patient can be tested freely and accurately. Poor patients must be given free drugs, regular support and nutritional supplements as well. We need to support the patients – together we can defeat TB!”

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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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