TB Survivor Calls For Awareness, Demands Free & Accurate Treatment

In the lead up to World TB Day, a TB survivor talks about why its time India acted to address the crisis of DR TB.

(This piece is an abridged extract from the book Tuberculosis - India’s Ticking Time Bomb: The Survivors’ Manifesto (Editor Chapal Mehra). The author is a contributor to the volume.)

(Deepti Chavan is an MDR (Multi-Drug-Resistant) TB Survivor and one of India’s leading patient advocates for ‘Survivors Against TB’. FIT will be bringing you stories of survivors in the lead up to World Tuberculosis Day, 2018)

I was sixteen years old in 1999, when I first started coughing. I went to our family general practitioner, who prescribed cough medicines. They helped and I got through my exams, yet the cough never really stopped. Finally, a month later, my doctor advised me to get a chest x-ray. I was diagnosed with TB.

While I was diagnosed with TB early on, recognizing that it was a drug resistant form took more time. My doctor kept changing the medications I should take, but never advised me to take a drug-susceptibility test (DST). Most doctors don’t suspect drug resistance and hence don’t ask patients to get the test done.

I took treatment for MDR TB for six years, during which I took about 400 injections. I had to undergo two major surgeries to get my affected lung removed.

The medicines I took had severe side effects: my vision and hearing were affected and I had nausea and joint pains all the time. 

The worst side effect was from a drug that is basically a dye - my skin became dark.

Patients affected with MDR TB know so very little about it. Doctors rarely suspect it. Patients are never asked to opt for DST. In numerous cases, the degree of resistance is exacerbated due to incorrect treatment.

MDR TB is nothing short of a death sentence for thousands of Indians.

In truth, Drug-Resistant (DR) TB is India’s ticking time bomb - a crisis within a crisis. For the uninitiated, it is a strain of TB where the infected person will not respond to, and is resistant to, at least one of the leading TB drugs.

India’s Ticking Time Bomb: DR TB

TB is curable, but recovery from DR TB depends on the kind of resistance, how quickly one is diagnosed and appropriate treatment. The survival rate for MDR TB remains a mere 40 percent globally.

India is estimated to have 100,000 DR TB cases. This fact became prominent only in 2012 when TDR or XXDR TB cases were reported in Mumbai, leading to a national and international focus on TB. While the government rushed to announce measures, not enough has changed even six years later.

A recent publication in The Lancet predicts that by 2040, one in every ten cases in India will be drug resistant, raising the current number of DR TB cases significantly.

As an MDR TB survivor I can tell you, MDR TB is a nightmare. Even today, DR TB patients in India can take as long as a year to access correct treatment, largely due to the delays in access to timely and rapid diagnostic molecular technologies that are either too expensive or unfamiliar to most private healthcare providers.

The result is human suffering, rising costs and increased transmission.

What Do Patients Need?

1. If India is serious about addressing DR TB, India needs to start by being honest. The country announced a DR TB survey three years ago, which has released no numbers till date. We need to understand truly how large the epidemic is to plan for the quantum of technologies and drugs we require to fight DR TB.
2. A large section of India seeks care for DR TB in the private sector. The government must create an effective partnership which ensures that every DR TB case is diagnosed and treated efficiently without unnecessary costs or delays. Everyone must have access to free and accurate diagnosis and treatment.
3. We need large-scale awareness in providers and patients. Awareness remains very poor and as a result DR TB is diagnosed late and often treated inappropriately. Every Indian needs to know and understand the dangers and symptoms of TB.
4. India must ensure access to free and high-quality treatment for DR TB patients irrespective of where they seek care. It must also provide access to the two new drugs, Bedaqualine and Delamanid, particularly to patients in the private sector. No Indian should be denied new drugs irrespective of where they seek care.
5. Patients and families affected by DR TB suffer stress and information gaps and require counselling. India needs to create a patient support system which includes counselling, nutritional and economic support. Provide every Indian not just treatment but the support they need for fighting TB.
6. India must ensure that DR TB does not lead families into debt and poverty. We need every patient to be provided economic support through a transparent and accountable system without hurdles such as Aadhaar and other limitations.

Its time India acted to address its crisis of DR TB. Otherwise we may be too late to act and the implications would be devastating.