By Nandita Venkatesan, Saurabh Rane and Deepti Chavan for Survivors Against TB:
Every minute that you spend reading this article, an Indian will die of TB. India has 2.8 million TB cases – a disease which kills over 400,000 Indians every year. These statistics mean nothing to most people because TB is easily India’s most neglected health crisis. What we fail to notice behind the statistics are human stories of suffering, grit and determination.
From a patient’s perspective, India has failed to control TB. Tuberculosis though easily contracted is cured with difficulty and it is a challenge to survive. As survivors, we can say the purely medical paradigm i.e. to diagnose and treat has failed to address TB in India. The government and doctors fail to understand the social, economic and cultural circumstances in which Indians address TB. It is also critical to understand the way in which those affected by TB interact with the health systems, within their families and communities.
From a survivor’s perspective, overcoming TB takes more than diagnosis and treatment; it requires social, economic and family support, along with counselling and stigma reduction. This is sorely missing in our health systems and our communities.
So how can India comprehensively address TB? It must begin with, listening to the voices of patients and survivors. They will tell you that strong efforts are needed to raise public awareness and reduce stigma. What India desperately needs is a comprehensive awareness campaign to ensure knowledge of all kinds of TB, their symptoms and the need for early diagnosis and treatment.
For instance, we must focus on creating awareness of Extra Pulmonary TB (EP-TB), which remains neglected, and those affected by it suffer from delayed diagnosis and treatment. We need TB survivors as ambassadors at the local and national level through public campaigns. In the end, all stakeholders especially patient groups should have a say in the development of policy and communication strategies.
While most TB affected delay seeking medical help and when they do, they rarely receive a quick and accurate diagnosis. Why? Because the diagnostics we use, are either too expensive or sub-standard. The way to address delayed and inaccurate diagnosis is to provide universal access to free highly reliable TB tests irrespective of whether patients receive care in the public or private sectors.
While addressing diagnosis, India must also address treatment for both drug sensitive and drug resistant TB. India is believed to have close to 100,000 cases of Multi-Drug Resistant (MDR) TB making it a frightening epidemic. This is harder and more expensive to diagnose and treat. The way to address this is by ensuring patients get appropriate treatment for drug-sensitive TB and every Indian who is diagnosed with TB is also tested for drug resistance. No one should have to wait for months for a diagnosis of drug-resistant TB or pay exorbitantly for it.
Apart from providing every TB patient with an upfront Drug Susceptibility Test (DST), to rapidly identify MDR and more severe forms of DR-TB, we must individualise treatment regimens. We need to give patients drugs to which they are not resistant. India also needs to urgently expand access to the new drugs particularly to patients in the private sector with ease to ensure that no patient goes without treatment.
Perhaps what patients need most for improved outcomes of TB treatment is better nutrition and counselling throughout the treatment period. How can a person without food be expected to eat medicines? Or survive horrific side effects without appropriate counselling? We also need to create economic support programs – to support TB patients and their families during the treatment period and to avoid further impoverishment. This has been attempted in Cuba and shown remarkable results in ensuring adherence and reducing catastrophic health expenses.
Yet, most of this is not available in either the public or the private sectors. There exists no partnership between the two to address TB. Close to 70% of all of Indian’s seek care for illnesses including TB in the private sector. We have to treat TB as a national emergency and launch initiatives that can innovatively engage and partner with the private sector to control TB. This government with its focus on technology is best positioned to implement this.
Most policy makers, doctors, program managers will argue that these changes are too many to achieve. However, if they understood how TB destroys an individual and their families – none of this would seem too ambitious. We also have to recognise that TB costs $ 23.7 billion in losses. Hence every rupee spent on TB yields much more in savings.
As TB affected, we were told that our disease was a virtual death sentence. We fought it and survived but not everyone is that fortunate. Why must millions of Indians go through what we did? We must recognise we are sitting on ticking time bomb, the longer we delay action, the harder it will be to defuse TB in India. It’s time to end TB in India.
About the authors:
Nandita Venkatesan [Journalist, 26, Survivor Extra Pulmonary TB (EPTB)]
Nandita survived EPTB twice within a span of 6 years. She was misdiagnosed and went through numerous surgeries to recover and build a new life as a professional. Her story epitomises the struggle that women go through when surviving TB in India or elsewhere. She lost her hearing as a side-effect due to TB medication.
As a survivor, Nandita speaks out against TB-related stigma and the need for increased awareness about TB. She is also a strong advocate of improved access for TB affected to free diagnosis and treatment. She currently lives in Mumbai with her family and works as a journalist.
Saurabh Rane [Development Professional, 24, Survivor MDR TB]
Saurabh is an MDR TB and borderline XDR TB survivor. Despite being a medical professional he was extensively misdiagnosed and treated inefficiently. He survived numerous side effects but fought TB through resilience and grit substantiated by support from friends and family.
In order to prove that he had triumphed over TB he ran 10 Km race during the treatment even though he had lost half of both his lungs to TB. He also completed a 20,000 ft. trek: one of the hardest in India. He is now an advocate for those affected by TB and writes and speaks on issues of programmatic change, community education, nutrition and economic support for TB affected. He is currently working a healthcare consultant.
Deepti Chavan [Patient Advocate, 32, MDR TB Survivor]
Deepti Chavan is an MDR-TB survivor. She took treatment for six years and underwent two major surgeries to get her affected lung removed. Now, she counsels people affected with TB and talks about her experiences at TB related events. She has also spoken about her experiences on radio, print and TV to inspire patients to fight and never give up. She is now working towards being a patient advocate.
About Survivors Against TB:
Survivors Against TB is a group of TB survivors who have come together to advocate on key issues around TB in India. Through their experiences of surviving TB and their understanding of the patient experience, they work to reduce stigma, impact policy and create greater awareness around TB. Through advocacy and outreach they aim to create a more inclusive policy and programmes ultimately resulting in more patient-centric care. They also provide support to a patient undergoing treatment through counseling and guidance.