For Zoroastrians, the holiest of holies is Udvada, a village in south Gujarat. It is loaded, or at least it was, with priests. When, over a hundred years ago, the British insisted on everyone having a surname, those who had none chose either their profession or their place of residence. Those from Udvada became Udvadias.
Fast forward to Bombay, as it was then called. Udvadias opted for various vocations. One family soon became full of doctors, in almost every field. This is the story of one of them and his battle with bureaucracy.
Tuberculosis (TB) is a deadly disease. It saps the very vitals of the patient slowly. No drug in India could combat it till the 1960s. Then, an antibiotic, Rifampicin, was discovered. Soon, everyone would say, ‘TB is curable’. The dreaded disease had been contained. Then, the turn of the century brought up a new problem. Viruses and bacteria do not like to die. Like humans, they resist death. They mutate. TB germs fought back and became drug resistant. Rifampicin and other medicines no longer worked.
A girl from Bihar was diagnosed with TB in 2012. Normal drugs seemed to work at first. Then, she started to lose weight and the slide downhill was blamed on drug-resistant TB. Medicines failed. A glimmer of hope lay in a new wonder drug called Bedaquiline.
By now, it was May 2014. She was moved to The Lala Ram Swarup TB Hospital in Delhi. Bedaquiline would help. But it was not administered to the girl. She was not even told that it existed. By October 2016, she weighed only 25kg. That is when she was brought to Mumbai and to Dr Zarir Udvadia. He recommended Bedaquiline. After all, he was the first to publish a study on the drug in 2012.
Unfortunately, he could not administer it as its use had been restricted by the Union government under the Revised National Tuberculosis Control Programme. Good intentions gone wrong. The drug could only be given in select cities, Delhi being one. But not to this dying girl. Why? Because she was not from Delhi!
Dr Udvadia tried every avenue. He failed. Not one to give up, he, and the girl’s father, sought the court of last resort: a law court. The father petitioned the Delhi High Court; his daughter was withering away.
You be the judge. Should the judge uphold the government’s rule or try to save the child? Blessed are the courageous souls that grace our courts. He ordered the administering of Bedaquiline. A law court had come to the rescue of a sick girl.
“My daughter would still be struggling in the absence of any treatment, if Dr Udwadia had not helped us. He was hand-holding us at every step. I and my entire family is indebted to him,” said the relieved father. Dr Udvadia has this to say: “Thousands more in this country need access to it (Bedaquiline) urgently.” He says that he currently has 30 patients on Bedaquiline and the success rate is 70%. “Many more patients under my care need this miracle drug; but access to it remains difficult. I have gone through a lot of difficulties to get Bedaquiline.”
One may not find fault with the authorities for the restrictions. Wonder drugs are powerful; they also have side-effects, sometimes fatal. But a ‘one-size-fits-all’ bureaucratic attitude may be self-defeating. Does every patient have to seek legal redress? The question then is: Where does one draw the line? In the case of TB, its recent resurgence has raised much apprehension. Even a single day’s neglect in taking the pill can lead to resistance. So strict has the enforcement to be that health workers make daily rounds to ensure compliance. A full course takes 18 months. TB can spread like wildfire and some estimates conclude that 90% of the population may be carrying TB germs. Only, they have not manifested themselves. As yet.
As a TB patient from 1996 to 1997, this author knows only too well the ravages it causes to the body. Unfortunately, there is no preventive vaccination for drug-resistant TB. One can only hope that, like smallpox, TB too is eradicated. And not burden our over-burdened courts.