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Tuberculosis And Stigma: Do Doctors Have A Role To Play?

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In my 25 years of treating tuberculosis (TB) in Mumbai, I have faced several challenges in providing treatment to my patients. Though stigma against people with TB is just one of the many difficulties we face as we wage a war against the disease, it should never be underestimated. Little do we understand the impact of stigma on those suffering from TB – nor do we realise the harshness of stigma which influences one’s health seeking behaviour, capacity to complete TB treatment and affects individuals, mentally.

Deepti Chavan, MDR TB Survivor, Patient Advocate. PC: Shampa Kabi

When a TB patient visits a doctor, all our focus is on treatment completion. Often, little to no information is offered on either what it means to fight TB in the social context, especially if you are female, or the public perception of the disease. Often we just ask them to maintain a silence that surrounds TB. Don’t tell anyone, patients are told, because others don’t understand.

There is no denying the fact that those impacted by TB face stigma at some juncture. Popular beliefs around TB are scary- TB patients are considered to be cursed; TB is believed to be an incurable disease; rumours are abound that the drugs used for treating TB are ineffective, causing more harm than good. Considering it’s contagious, TB patients are ostracized, avoided, discriminated against and mistreated. This fear compels them to hide their symptoms and often not pursue proper treatment.

The gender disparities in TB are striking. While TB affects twice as many men as women, the brunt of stigma disproportionately impacts women. Misinformation about TB related to women’s fertility is rampant, leading to greater and more severe stigma faced by women, ranging from neglect to abandonment. Young girls of marriageable age, want to hide and not seek treatment especially because they don’t want to be seen taking treatment. Similarly, when girls get married while on treatment, they stop medicines fearing that the in-laws will get to know. Even among healthcare professionals stigma of TB is prevalent. Young lady doctors working in TB hospitals find it difficult to find a life partner, hence they give up their job.

Men are also not entirely spared. The stigma of TB has rendered many men jobless, isolated, depressed—consequentially affecting other family members who are dependent on them. Men also face ostracism, social abandonment and discrimination.

Saurabh Rane, MDR TB Survivor, Development Professional. PC: Prachi Gupta

Even healthcare workers don’t spare TB patients. It is well-documented that the quality of a patient–provider relationship is directly proportional to TB treatment and completion. However, how can we expect TB patients to complete treatment if healthcare providers, their own families and society continues to stigmatize, mistreat and discriminate against them?

Because of the prevailing stigma, people suffer from depression, are unable to seek help and often abandon treatment. It creates guilt, self-blame, self-pity, shock, sometimes suicidal attempts especially in case of MDR TB. Denial, hiding the diagnosis, ignoring symptoms, not seeking medical help are consequences of stigma which are commonly seen by us doctors. Such a scenario leads to a negative impact on the treatment outcome.

The problem begins with the health system and health education. We aren’t taught to engage with patients and the system, with its high influx and shortage of heath personnel, allows us little time for it. It’s time to talk about and address stigma and each of us – especially doctors have a role to play. India, which is home to the highest TB burden in the world, plans to eliminate the disease by 2025. Yet it doesn’t clearly acknowledge TB stigma as a major impediment to this deadline. Why is this the case? Why do we as a society, collectively not fight the stigma of TB? What is so different about TB and its stigma that it cannot be addressed?

Nandita Venkatesan, (Twice) Extra-Pulmonary TB Survivor, Journalist and Bharatnatyam Dancer. PC: Rohit Saha

Let’s start by listening to and talking to our patients. Let’s talk to them about stigma, how to address it and lead a quality life after TB. We urgently need a sensitive and patient-centric approach, where care and dignity are given prominence in both the public and private sectors. Providing counselling to TB patients and their families can go a long way in dispelling and dealing with stigma. It also improves adherence to treatment. Conducting workshops to train frontline healthcare providers to be compassionate towards all patients is a necessity. Integrating stigma prevention as a core component of nursing and medical curricula will also yield positive results in the long-term.

Finally, it’s most critical that we sensitize and educate patients on their rights. No one has the right to stigmatize or discriminate against any TB patient, whether they are family, community members, or healthcare providers. In this context, creation of patient support groups can go a long way in helping TB patients deal with TB. For instance, at Sewree TB hospital in Mumbai, we employ survivors of MDR TB as TB counsellors. The initiative has helped many patients come out of negative self-image and self-pitying attitudes.

Public information campaigns educating the public on TB and its infectiousness and non-infectiousness will play a huge role in dispelling the stigma around TB. Such large-scale campaigns must be substantiated by appointed brand ambassadors—such as public figures, celebrities, sportspeople. We need to talk about stigma and get the message home.

If India aims to eliminate TB, it needs to work towards ending stigma by addressing its very core: the attitudes held by all. It is a long-term process, but one that needs immediate attention. Until, we break the silence around stigma, eradicating TB, will remain a pipe dream.

Dr. Alpa Dalal is a Leading Chest Physician from Jupiter Hospital, Thane, Mumbai

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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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