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The 6 Year Long Fight Against “India’s Ticking Time Bomb” – A TB Survivor’s Story

Posted on April 1, 2015 in Health and Life, My Story

By Chapal Mehra:

Deepti was 16 when she first started feeling sick. She could not stop coughing. At first she thought it was just normal viral cough, but despite medication, her cough never really stopped. The doctor advised a chest x-ray, and it took her more than a month to get diagnosed with TB. Her family could not believe it and had never imagined that she could have this disease.

Her medication continued but didn’t help. After a few months her doctor informed that a part of her left lung had decayed and hence surgery was required. This was because of a more dangerous form of TB called Multidrug-resistant TB. Her parents were confused and had no clue as to what it meant. Life changed for the worse after that with endless medicines and injections.

Finally, after 6 years of fighting the disease she was finally cured.

Surviving TB wasn’t without challenges and doubts. Yet, Deepti was lucky because she had family support and was eventually able to get the appropriate treatment. Barring some people, everyone stood by her and never discriminated against her. However, millions of Indians are not and they continue to suffer without appropriate diagnosis and treatment.

This is Deepti’s story:

Undoubtedly, TB has become India’s biggest heath crisis. Our country has the highest TB burden globally, with close to 2.2 million new cases each year. Though preventable and treatable, TB kills a 1000 Indians everyday and 3 lakh Indians each year. Most prevalent among the 15-54 age group, it also impacts household income and acerbates poverty by pushing families into debt. The annual costs of TB to India stand at USD 23.7 billion.

Over the last few years, India has been facing an epidemic of drug resistant TB (DR -TB). In 2012, cases of Extremely Drug-Resistant TB (XXDR-TB) were reported in Mumbai. The treatment for DR -TB is extremely long and expensive with an exceedingly poor cure rate. DR TB is nothing short of a death sentence for the poor and vulnerable.

But India’s response to this crisis has been woefully inadequate. By some estimates, close to a million patients remain undiagnosed and untreated, falling somewhere between the overburdened public sector and exploitative private sector. Recognizing the urgent need to prioritize TB, this World TB Day, a group of concerned and eminent citizens wrote an open letter to Prime Minister Narendra Modi, urging him to make TB control a priority in the nation, terming it as a national crisis. The letter’s signatories include prominent citizens such as industrialist Adi Godrej, scientist M S Swaminathan and actor Aamir Khan, who also hosted a path breaking episode on TB in Satyamev Jayate last year.

The letter is accompanied by a set of recommendations drafted by a group consisting of doctors, civil society organizations (CSOs), epidemiologists and social scientists identifying urgent actions necessary to improve TB control in India. These recommendations are in the areas of public awareness, diagnosis, treatment, drug resistance, information systems and private sector engagement.

The recommendations appeal that India must provide free and accurate diagnosis as well as appropriate treatment to every single Indian regardless of whether they seek care in the public or private sectors. The recommendations also suggest that the government needs to provide all TB patients with an upfront Drug Susceptibility Test, to rapidly identify MDR and more severe forms of DR-TB. Moreover, experts suggest that instead of giving a standardized regimen, we need to individualize treatment regimens, choosing only drugs to which we know TB bacteria are sensitive to. The government must also consider introducing, under controlled conditions, new drugs that have the potential for curing the most resistant TB strains.

The key focus areas of these recommendations are prevention, community engagement and empowerment. These, the experts suggest, can be addressed through comprehensive multi-media awareness campaigns to ensure awareness of TB, community engagement and empowerment programs to help fight stigma.

Perhaps the most significant of these suggestions is that the government must actively and effectively engage the private sector. TB in India will never be controlled without participation from the private sector since more than 70% of all TB patients first seek care in the private sector only. The letter suggests learning from experiments currently underway in India where the local city governments have transformed how TB is diagnosed and treated, addressing the crisis upfront.

It also urges the government to recognize the economic and social dimensions of TB and to provide nutrition supplements for all patients with low body weight or those who are below the poverty line. It should also create economic support programs – to support TB patients and their families during treatment period, to avoid further impoverishment.

While the letter is possibly the most comprehensive and detailed set or recommendations on TB, it will have little resonance until sufficient political attention is paid to this health crisis at the highest levels. Politicians continue to unaware of the magnitude of this disease or its implications. Hopefully, the government will take heed and hopefully we can begin to address the crisis that TB is. Until then, it continues to remain India’s silent killer.

Deepti says “I genuinely believe that TB is India’s ticking time. There need to be proper testing facilities where each patient can be tested freely and accurately. Poor patients must be given free drugs, regular support and nutritional supplements as well. We need to support the patients – together we can defeat TB!”