I was barely 19 years old when I was diagnosed with tuberculosis. I went to my local clinic for a thyroid test because I was not gaining weight and my family doctor told me to get a sputum test done because of my family background of TB. Tests at the Hinduja Hospital in Mumbai, where I have lived all my life, showed that I had extensively drug resistant or XDR TB. As someone who came from a TB-affected family, I wasted no time in seeking the right treatment. I knew I had to seek care early.
As I began my fight against TB, I recalled seeing my mother cry when she dealt with my father’s illness. I did not want her to suffer this way for me. I also recall the psychological effects of TB drugs on my father that left him with depression. My diagnosis only worsened his state of mind. I was determined to defeat TB without troubling anyone.
Treatment for XDR TB is not easy or without side effects. The survival rate is dismal. But apart for one drug that induced vomiting, I was fortunate enough to not have any serious side effects. I was put on Bedaquiline, which is a new drug for XDR TB, for six months. At that time, Bedaquiline was provided only to a few on compassionate grounds. I was fortunate be able to get treatment from chest physician Dr Zarir Udwadia at Hinduja Hospital who enrolled me in the programme. Dr Udwadia and Hinduja hospital had managed to obtain Bedaquiline several times for TB patients and knew the procedures. In other places in India, most patients have had no access to the drug.
I managed to tolerate the drug without any severe side-effects even though I was told I could suffer from nausea, joint pains and other complications. After a successful surgery removing a portion of my lung and six months of the right combination of drugs, I started gaining weight again and began returning to normal life. The TB began to ebb away.
I am not a doctor but as I look back, I realise that had I not received an appropriate combination of both new and older drugs, I would not have survived. I also had great trust in my doctor and not once through the ordeal did I fear death. Today I am alive in part due to a balanced treatment regimen that allowed a highly drug-resistant patient to recover completely. But I know that I am among the lucky few. What happens to those millions who are highly drug-resistant and do not have access to these medicines?
Recently, there have been speculations about the new TB drugs Bedaquiline and Delanamid. Arguments have been raised about the ethics of using a drug like Bedaquiline whose Phase III trials, which is supposed to be carried out on a large cohort of human subjects, have not been done yet. As an XDR TB survivor, I believe the argument that the drug should not be used till the trials are over is off the mark.
The only hope for some TB patients
While research around the drug should continue, it is also important to talk to patients and survivors to understand the importance of these drugs in a treatment regimen. The recent World Health Organisation directive on the inclusion of Bedaquiline in the first set of drugs to be used to treat drug-resistant TB is a testimony to the fact that the drug is indeed effective and helpful to those suffering from multi drug-resistant or MDR TB. If used carefully and responsibly it has the potential to save thousands who currently struggle with poor treatment regimens that do not show sufficient impact.
India is home to almost 1,50,000 drug-resistant TB cases, several thousands of which remain untreated. For such people, access to newer drugs remains the only hope of fighting, surviving and defeating TB.
The new drugs are still being regulated by the government and are not available in the open market. They have been approved for case-to-case consideration and are not sale. Recently a young girl died because her family tried to access these new drugs but it was took too long. The drugs are being distributed over-judiciously and so arguments that the use of the drug is either illegal or exploitative are incorrect.
It is important that all patients and families are informed about the drugs and its side effects comprehensively. I was briefed by my doctor on the drug before I was put on it. Access, however, should not be stopped. As a patient advocate, I constantly get queries on how to access these new drugs and few people have the awareness about how to get their hands on these drugs.
None of the toxic drugs used for treating drug-resistant TB cases come without side-effects. I strongly believe that every TB patient must be informed about each drug and its side-effects prescribed in the regimen. We often do not do that in India and this is a huge gap. I have known people who have lost their hearing, eyesight, and suffered through depression due to to side effects. However, this should be an excuse to stop access to new, life-saving drugs.
Today, I am alive, because of new drugs like Bedaquiline. I work full time in an advertising agency and live a normal life. I also work as a TB patient advocate, counselling patients on how to deal with treatment. We can create support systems to help patients through gruelling treatment but there is an urgent need to provide easier access to new drugs, if India aims to eliminate TB by 2025.