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.
#Tuberculosis is one of the three main killer infectious diseases, along with malaria and HIV/AIDS. TB kills one person every 18 seconds, yet the disease can be prevented, treated and cured #WorldTBDay2018 pic.twitter.com/xyJ0xgJFMA
— MSF INDIA (@MSF_Ind) March 20, 2018
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 $24 billion each year.
Many feel that the existing support and awareness to fight TB In India is not adequate for patients. In a Huffington Post piece, Dr. Madhukar Pai speaks about the challenges involved with fighting TB in India:
India also has the highest number of patients with multidrug-resistant TB in the world, including cases nearly impossible to cure.
Although India has the world's largest TB epidemic, quality of TB care remains suboptimal, especially in the private and informal sector, where most patients seek initial care. The average TB patient is diagnosed only after several months and seeing multiple providers, most of whom do not follow standard guidelines. Most patients who start treatment are not tested to see if their TB is drug resistant.
Apart from poor care, TB in India is fueled by broader socioeconomic factors, including extreme poverty, high prevalence of malnutrition, smoking, and diabetes.
In India, nutrition, poverty, and TB are very much linked. People affected with TB frequently face severe economic barriers to health care, such as high expenses related to diagnosis and treatment, and suffering due to loss of income. A health ministry proposal for a monthly cash benefit of Indian Rs 500 (US$ 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.
Tackling TB: @MoHFW_INDIA issues notification criminalising non notification of Tuberculosis. Docs, chemists can face jail up to 2 years under IPC Sections 269, 270 for not reporting TB cases to local health authorities @ddgtb2017 @JPNadda @PMOIndia @thetribunechd
— Aditi Tandon (@anshumalini3) March 21, 2018
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.
— Narendra Modi (@narendramodi) March 13, 2018
Govt of India commits to eliminate TB by 2025. India alone accounts for 25% of global TB cases.Govt of Uttar Pradesh, catering to 220 million citizens is committed to lead the country’s campaign against TB through universal access to quality diagnosis & treatment for all
— Pooja Bhatt (@PoojaB1972) March 15, 2018
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.
— Global TB Coalition (@G_C_T_A) March 12, 2018
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.
India has 2.2 million cases of #Tuberculosis
An average TB patient consumes 14600 pills to cure it.
To take in it #SurvivorsAgainstTB is born. What do they provide? … It's HOPE! #TEDxGateway @foodrecyclebin
— Monis Khan (@ItsMonis) February 4, 2018
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.
https://t.co/KXH3tEkx2Z – A multilingual patient education program comprising films and an app. Watch our #Malayali protagonist talk about the importance of #TB treatment and completion. Share widely #TalkingTB @ChapalMehra @WSJ @nytimes @TIME @VidyaKrishnan @shibuvij @StopTB pic.twitter.com/xmeRwmdRxa
— Survivors Against TB (@SATB1231) March 20, 2018
When a #TB patient decides to speak, the world is forced to listen. https://t.co/KXH3tEkx2Z – India's first multilingual Patient Education Program, led by survivors to offer information to TB. @VidyaKrishnan @RPrasad12 @menrao @scroll_in @SrBachchan @RonnieScrewvala @thewire_in pic.twitter.com/mvwcGEmEiu
— Survivors Against TB (@SATB1231) March 19, 2018
There are also many efforts by other organizations to fight against TB in India.
“#TB survivors release report identifying key issues patients face” Tuberculosis – India's Ticking Time Bomb- The Survivors’ Manifesto https://t.co/UMNtgrhYUk @ChapalMehra @doctorsoumya @deepticomesback @foodrecyclebin @bsindia @WHOSEARO @DrSinghAtAIIMS @shibhu@paimadhu @acftbup pic.twitter.com/eYq7kQAhIq
— Survivors Against TB (@SATB1231) March 22, 2018
Mumbai, which suffers so terribly from TB and drug-resistant TB, lights up red to #EndTB. Dynamic local TB program going all out! @ddgtb2017 @DrRaghuramRao @arunkjhaies @StopTB @MoHFW_INDIA @GHS @sreenivas_nair @paimadhu pic.twitter.com/O6LLeCyfK4
— Puneet K Dewan (@puneetkdewan) March 21, 2018
— REACH (@SpeakTB) March 19, 2018
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.