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I Lost A Lung, My Hearing And All Of My Family’s Savings Because Of Incorrect Medication

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A few years ago, I was at the peak of my life. I was successful, happy and ambitious. But I fell ill and was diagnosed with multi-drug resistant tuberculosis (MDR TB) at the first test. Till then, TB had nothing to do with my life. I remember thinking, sitting in the doctor’s office; it is curable. It will all be over soon. But I was wrong. Over months of treatment, things got worse. X-rays revealed that my left lung was destroyed, and the other lung was slightly infected too. I was resistant to three of the four drugs in the standard 4-drug kit prescribed for MDR TB. I used to vomit bowlfuls of blood, and the doctor used to tell me- ‘it happens’. I believed him and started living in hope.

TB changed my life completely. I lacked the strength to do anything and felt helpless. Though my parents did everything they could, their efforts were often misguided, because uninformed doctors and incorrect lab reports led them in the wrong direction.

Three years of incorrect medication, and it only got worse. My doctors in Pune wrote me off as an Extremely Drug-Resistant case (XXDR TB), saying there was nothing more that could be done; that I was incurable. I was young and determined, and not quite ready to die yet. I came to Mumbai’s Hinduja Hospital to meet Dr Udwadia- the country’s finest Pulmonologist.

I was so weak that I couldn’t even talk. Based on tests done at the Hinduja Hospital lab, I was told I was highly drug-resistant, which meant I was virtually incurable. I was prescribed a new set of medications, including the drug Bedaquiline, a new experimental drug, which I had managed to receive on compassionate grounds. I stopped thinking, why did this have to happen to me, and instead started focusing on getting better. By June of 2015, after six months of intensive therapy, my sputum test eventually showed a radical improvement, with just a single course of Bedaquiline.

Today, though I have completely recovered, I often ponder over how much of my lung I could have saved if I’d gotten that new drug earlier. Those three taxing years cost me a whole lung, my hearing and all of my family’s savings. I survived, in part, due to Bedaquiline and its effectiveness to convert a highly drug-resistant strain of TB to sputum-negative.

More recently, there have been speculations about this drug. More prominently, arguments have been raised about the legalities and whether it should be given to patients. While research on the drug should continue, it’s also important to ask the patients, the survivors, to understand the complete story. The recent World Health Organisation’s (WHO) directive on the inclusion of Bedaquiline in the first set of drugs to be used to cure drug-resistant strains of TB, is a testimony of the fact that the drug is indeed effective and helpful to those suffering from MDR TB. If used intelligently and responsibly, it has the potential to save thousands who currently struggle with poor treatment regimens, that do not show sufficient impact.

India has thousands of cases like me- extremely drug-resistant and virtually without hope and cure. For them, these new drugs are often the only hope of surviving and defeating TB. I have met many others like me who survived because of this new drug. The government decided to make this drug available on a conditional basis. While I applaud this effort, I strongly feel this is still not enough. Most Indians who need this drug today still lack access to it. There is a need to expand access to the drug, especially to those seeking care in the private sector. Patients should not face inordinate delay and paperwork for a drug, that can make the difference between life and death.

I remember the time I was prescribed injections three times a day. These injections were helpful, but excruciatingly painful. Is this the kind of treatment, we would want for those suffering from drug-resistant TB? And not to forget that one side effect of the injections was a loss in speech and hearing. Is that humane?

This is the closest, ground-reality based experiential understanding of the impact of a new drug that you will ever have. I am alive only because of these new drugs and the indomitable spirit of an incredible doctor who fought for this drug for me. As an XXDR survivor, it is vital I highlight that the drugs are available only through the government and not in the open market. Yet, we need improved access through this system. It’s being used as a life- saving drug not being made available to anyone and everyone. The government, even today, rations the use of such drugs, fearing misuse. What we should instead be talking about is how this drug can be made accessible to those who need it the most, easily.

Today, I am able to work full-time, live a normal life and also work as an advocate with TB patients, helping them get through treatment. I often receive queries regarding this drug- how can this drug be accessed? Who will give these drugs? There exist uncertainty and confusion among those who have been prescribed these drugs. There is an urgent need to provide hassle-free access to these new drugs if India aims to eliminate TB by 2025. Otherwise, what use will they be- if they don’t save lives and help us defeat TB?

Debshree Lokhande, is a member of Survivors Against TB and an XXDR TB survivor. 

Photo credits: Rohit Saha

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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, demanding that the Government of Assam install
biodegradable sanitary pad vending machines in all government schools across the state. Her petition on has already gathered support from over 90000 people and continues to grow.

Bidisha was selected in’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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