A few years ago, I was at the peak of my life. I was successful, happy and ambitious. But I fell ill and was diagnosed with multi-drug resistant tuberculosis (MDR TB) at the first test. Till then, TB had nothing to do with my life. I remember thinking, sitting in the doctor’s office; it is curable. It will all be over soon. But I was wrong. Over months of treatment, things got worse. X-rays revealed that my left lung was destroyed, and the other lung was slightly infected too. I was resistant to three of the four drugs in the standard 4-drug kit prescribed for MDR TB. I used to vomit bowlfuls of blood, and the doctor used to tell me- ‘it happens’. I believed him and started living in hope.
TB changed my life completely. I lacked the strength to do anything and felt helpless. Though my parents did everything they could, their efforts were often misguided, because uninformed doctors and incorrect lab reports led them in the wrong direction.
Three years of incorrect medication, and it only got worse. My doctors in Pune wrote me off as an Extremely Drug-Resistant case (XXDR TB), saying there was nothing more that could be done; that I was incurable. I was young and determined, and not quite ready to die yet. I came to Mumbai’s Hinduja Hospital to meet Dr Udwadia- the country’s finest Pulmonologist.
I was so weak that I couldn’t even talk. Based on tests done at the Hinduja Hospital lab, I was told I was highly drug-resistant, which meant I was virtually incurable. I was prescribed a new set of medications, including the drug Bedaquiline, a new experimental drug, which I had managed to receive on compassionate grounds. I stopped thinking, why did this have to happen to me, and instead started focusing on getting better. By June of 2015, after six months of intensive therapy, my sputum test eventually showed a radical improvement, with just a single course of Bedaquiline.
Today, though I have completely recovered, I often ponder over how much of my lung I could have saved if I’d gotten that new drug earlier. Those three taxing years cost me a whole lung, my hearing and all of my family’s savings. I survived, in part, due to Bedaquiline and its effectiveness to convert a highly drug-resistant strain of TB to sputum-negative.
More recently, there have been speculations about this drug. More prominently, arguments have been raised about the legalities and whether it should be given to patients. While research on the drug should continue, it’s also important to ask the patients, the survivors, to understand the complete story. The recent World Health Organisation’s (WHO) directive on the inclusion of Bedaquiline in the first set of drugs to be used to cure drug-resistant strains of TB, is a testimony of the fact that the drug is indeed effective and helpful to those suffering from MDR TB. If used intelligently and responsibly, it has the potential to save thousands who currently struggle with poor treatment regimens, that do not show sufficient impact.
India has thousands of cases like me- extremely drug-resistant and virtually without hope and cure. For them, these new drugs are often the only hope of surviving and defeating TB. I have met many others like me who survived because of this new drug. The government decided to make this drug available on a conditional basis. While I applaud this effort, I strongly feel this is still not enough. Most Indians who need this drug today still lack access to it. There is a need to expand access to the drug, especially to those seeking care in the private sector. Patients should not face inordinate delay and paperwork for a drug, that can make the difference between life and death.
I remember the time I was prescribed injections three times a day. These injections were helpful, but excruciatingly painful. Is this the kind of treatment, we would want for those suffering from drug-resistant TB? And not to forget that one side effect of the injections was a loss in speech and hearing. Is that humane?
This is the closest, ground-reality based experiential understanding of the impact of a new drug that you will ever have. I am alive only because of these new drugs and the indomitable spirit of an incredible doctor who fought for this drug for me. As an XXDR survivor, it is vital I highlight that the drugs are available only through the government and not in the open market. Yet, we need improved access through this system. It’s being used as a life- saving drug not being made available to anyone and everyone. The government, even today, rations the use of such drugs, fearing misuse. What we should instead be talking about is how this drug can be made accessible to those who need it the most, easily.
Today, I am able to work full-time, live a normal life and also work as an advocate with TB patients, helping them get through treatment. I often receive queries regarding this drug- how can this drug be accessed? Who will give these drugs? There exist uncertainty and confusion among those who have been prescribed these drugs. There is an urgent need to provide hassle-free access to these new drugs if India aims to eliminate TB by 2025. Otherwise, what use will they be- if they don’t save lives and help us defeat TB?
Debshree Lokhande, is a member of Survivors Against TB and an XXDR TB survivor.
Photo credits: Rohit Saha