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Tuberculosis Survivors Advocate To Eradicate The Disease From India

TB Survivor Dipti Chavan (34) tells her story. Image via Survivors Against TB. Used with Permission.

March 24th marks World Tuberculosis (TB) Day. TB is one of world’s leading infectious diseases and affects more than 2.4 billion people — almost one-third of the world’s population. According to World Health Organisation (WHO) statistics, India is the country most heavily burdened by TB and many feel that the country isn't doing enough to stay ahead of the disease.

Survivors Against TB (SATB), an advocacy group lead by TB survivors in India, is working to strengthen India’s fight against TB. Their latest effort is the beta version of a free app called Talking TB (टीबी पे चर्चा), a multilingual patient education programme which includes a set of patient education films available on the app and on YouTube and a patient support app. The films, as well as the app, are in four regional languages, Hindi, Marathi, Gujarati, and Malayalam.

TB in India

Out of a global incidence of 9.6 million cases, 2.2 million cases of TB are from India. This continues to cause a severe health and economic crisis in India as the disease costs the country close to $24 billion each year.

In 2007, the prevalence of TB per 100,000 people was relatively high in Asia, and was highest in sub-Saharan Africa. Image from Wikimedia Commons. Public Domain

Many feel that the existing support and awareness to fight TB In India is not adequate for patients. In a Huffington Post piece, Dr. Madhukar Pai speaks about the challenges involved with fighting TB in India:

India also has the highest number of patients with multidrug-resistant TB in the world, including cases nearly impossible to cure.

Although India has the world's largest TB epidemic, quality of TB care remains suboptimal, especially in the private and informal sector, where most patients seek initial care. The average TB patient is diagnosed only after several months and seeing multiple providers, most of whom do not follow standard guidelines. Most patients who start treatment are not tested to see if their TB is drug resistant.

Apart from poor care, TB in India is fueled by broader socioeconomic factors, including extreme poverty, high prevalence of malnutrition, smoking, and diabetes.

In India, nutrition, poverty, and TB are very much linked. People affected with TB frequently face severe economic barriers to health care, such as high expenses related to diagnosis and treatment, and suffering due to loss of income. A health ministry proposal for a monthly cash benefit of Indian Rs 500 (US$ 8) to all tuberculosis patients is facing resistance.

The Indian government has taken a number of steps to eliminate TB from the country. This includes developing the Standards for TB Care in India, introducing daily drug regimens and rolling out molecular and drug-susceptibility testing. The government of India has also made TB a notifiable disease, that means all private doctors, caregivers and clinics treating a patient suffering from TB will have to report every single case of the air-borne disease to the government.

On 13 March 2018, Indian Prime Minister Narendra Modi launched an ambitious campaign to eradicate TB from India by 2025. The globally set deadline is 2030.

But reports cast doubt on this target as India is lagging behind in its national decline rate. Many feel that a lot of efforts are needed from government and non-governmental sectors to tackle this challenge.

Dr. Zarir Udwadia, a Mumbai-based physician and a researcher, talks about this disease and India's struggle to tackle it at an independently organized TED event in Mumbai in February 2018:

In the video, he states that one Indian dies of this disease every minute and he goes on to share the story of one suffering patient who was diagnosed with Totally Drug-Resistant-Tuberculosis (TDR-TB).

For many, it is hard to understand a TB patient's plight unless it is told by a patient/survivor itself. Last year, at a TEDxGSMC event in Mumbai, Dr. Saurabh Rane, a public health specialist, runner, cyclist and mountaineer, talked about how he turned around after being diagnosed with XDR TB (Extensively Drug-Resistant TB) at the age of 20. In the video, Dr. Rane talks about how he tackled this disease and advocates for every person's right to be diagnosed, treated correctly and provided with life-saving drugs.

TB survivors against TB

Launched in August 2016, Survivors Against TB (SATB) is a movement led by a group of TB survivors who are working to strengthen India’s fight against TB. These survivors have had their struggles with TB and based on their own experiences, they advocate for a patient-centered approach to effective TB prevention and control in India. It is run and managed by Chapal Mehra, a public health specialist and columnist.

In 2017, Survivors Against TB launched India’s first Hindi digital interface on tuberculosis. The portal aims to help TB affected communities by offering them important information about the disease. Another feature of this platform is to profile numerous TB survivors who work as advocates that disseminate stories and information about treatment, mental health, gender and stigma.

In the above video, Deepti Chavan, an MDR-TB (multi-drug resistant TB) survivor based in Mumbai, tells the story of her fight against TB in the Hindi language.

Last year, SATB launched a book, Nine Lives — Women and Tuberculosis in India, which profiled nine female TB survivors who, despite stigma and discrimination, successfully fought TB.

SATB's Talking TB app focuses on disseminating information about key issues related to TB including side effects, stigma, nutrition, and treatment.

TB survivor Dipti Chavan advocating directly observed treatment or short-course DOTS (also known as TB-DOTS), a tuberculosis (TB) control strategy recommended by the World Health Organization. Image via Survivors Against TB. Used with Permission

There are also many efforts by other organizations to fight against TB in India.

SATB hopes that TB survivors stories will help people understand the numerous challenges that these people and their families face in the fight against TB. The demands of the TB survivors are out in the public domain and ask for support from decision makers. Dipti Chavan shares her hope in an interview:

Hopefully, these stories will spur decision makers to act on these recommendations.

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