Gasping For Breath

The second season of Gasping for Breath is about the people who live with Long Covid. 

About 22 months after the pandemic began, in October 2021, the World Health Organisation defined what they called Post Covid condition or what people living with the condition call Long Covid.

A recent study by the Institute of Health Metrics and evaluation which is still in the preprint stage has estimated that there are 144.7 million people suffering from Long Covid globally in 2020 and 2021. The same study estimated that about four crore people suffer from long covid in India. These people have symptoms of fatigue, respiratory symptoms and cognitive problems such as brain fog. Suno India’s founder, Padma Priya DVL is a long covid advocate and the founder of India’s Long Covid Support group

In this episode, Suno India’s Menaka Rao spoke to four survivors, Chinmay Pednekar, Sourya Dash, Girish Pasupathy and Alaknanda Daspute. The four survivors talk about how their initial experience of feeling completely alien in their own bodies.

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TB is also a highly stigmatised disease making it very difficult for patients enduring treatment. In this episode, we look at how the stigma makes it worse for women TB patients, a marginalised group. We hear the voices of women who express how they feel as TB patients and survivors, and the disease has affected their life significantly.

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The private sector treats about 70% of TB patients. In this episode, we go to Patna which is successfully running a programme in engaging the private sector to battle TB. The programme links the private sector with the facilities provided in the public sector which helps in standardising the diagnosis and treatment of TB.

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India has the highest number of patients suffering from drug-resistant tuberculosis in the world. However, the access to newer TB drugs which have so far been more effective are not as easily available. The patients are usually given old regimens which are less effective and full of toxic side effects. 

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In this episode, we travel to Manipur and understand the risks of TB infection with the drug user community. The drug user community has, by and large, been ignored by the TB programme of the country. However because of the risks of contracting other infections such as HIV and hepatitis C, and the use of opioids itself makes a person more vulnerable to TB. 

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The Joint Monitoring Mission recently visited Kerala and were all praises for its work in TB control with aims to eliminate the disease. In this episode we speak to Dr Shibu Balakrishnan and Dr Rakesh PS, both WHO officers in Kerala who have provided technical support in designing this successful programme. The experts talk about how engaging state health workers and resources optimally helped them work out a strategy that works.

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All it takes is a big box which cannot go unnoticed to stir a conversation about what's in/on it. In Jharkhand, that's what clicked in Hazaribagh district. Faiz Anwar made a box with "What do you know about TB?" written on it and asked for it to be passed on from one shop to another. In a place where TB is considered a curse and isn't something people want to talk about, he says, people now want to know about it and those with TB come to seek for guidance. In this episode, we spoke with Faiz to understand his efforts towards community outreach in the state of Jharkhand. 

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In this episode, we speak to human rights activist, Allan Maleche from Kenya Legal and Ethical Issues Network on HIV and AIDS (KELIN) which has supported rights of both HIV positive people and TB patients and fought in court. Last month, they were awarded the Kochon Prize at the 50th Union World Conference on Lung Health in Hyderabad. Maleche spoke about how the law can be effectively used to support TB patients. 

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In this special episode, Suno India editor, Padma Priya, brings an interview with Nandita Venkatesan, one of the founders of Bolo Didi.
Bolo Didi led by TB survivors and patient activists Nandita Venkatesan and Rhea Lobo is a sisterhood of women TB survivors who use social media, WhatsApp and telephone calls to connect with and mentor people affected by TB in India. 
The first-hand TB experiences of its didis (sisters) inform the support they offer and help people to receive an accurate diagnosis. From advising patients on right diagnosis test to informally counselling them to cope with side effects, this sisterhood of "didis" has so far helped numerous patients across the country.
More information on Bolo Didi is available at www.facebook.com/bolodidiTB.

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This episode will describe the various problems faced by both patients and doctors in diagnosing TB. TB is tough to diagnose, and the difficulties only compound as the patients still do not have complete access to all the advanced diagnostics when TB is first suspected. With drug resistance increasing in the country, India needs to loosen these systems to ensure proper diagnosis of the patients. 

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