Shreya Tripathi loved to read. And it should come as no surprise that the 19-year-old, who died needlessly from a drug-resistant strain of tuberculosis (TB), felt a particular connection to the 2012 novel The Fault in Our Stars.
The story is, after all, focused on teenagers locked in a mortal battle with cancer as their biologic foe. Shreya’s sister had given her the novel after Shreya became too breathless to leave her bed, the result not only of an infectious TB pathogen but of a society’s unwillingness to help her survive.
Shreya was one of the 10 million people who become sick with TB each year and one of the almost 1.6 million who die annually from this curable infectious disease. Unfortunately for the young woman from Patna, she was also one of the 580,000 people who are stricken with a type of TB known as “drug-resistant TB.”
Scientifically, having this type of TB means that the most powerful anti-TB medications available no longer work against the strain and thus treatment must instead consist of five-seven “second choice” drugs that need to be given for a minimum of 9-24 months. Colloquially, this type of TB is often known as “killer TB” because fewer than 50% of those who receive treatment are cured of their disease.”
But the numbers – as shocking as they are – can be sterile and distance us from the profound individual suffering that seems to hide in the multitudes. And this is a story about the valiant struggle of a very specific young woman.
Her name was Shreya. She loved the color pink. Her favorite fruits were litchis whose cool juiciness made the hot summer days in India a thing to look forward to. That is, until her lungs became so scarred and clogged with the TB bacteria, that even the most minimal efforts left her gasping for air.
The bedaquiline drug
When bedaquiline, the first new drug developed for the treatment of TB in almost fifty years and the only medication for DR-TB that had ever been tested in a randomised, controlled clinical trial, hit the market, clever Shreya – who had been fighting drug-resistant TB for almost two years – heard about the medication and correctly thought “this is what my body needs.”
Although the phase III study result are not expected until 2020, results from thousands of patients assessed by the WHO show that early use of bedaquiline was associated with remarkably high rates of treatment success. In most settings, above 80% were successful, even when it was given to the most critically ill people living with the disease.
Why did the doctors, people who Shreya trusted and went to looking for help, not offer her bedaquiline? There may never be a satisfactory answer to this question – certainly not for Shreya’s family, who gave up everything to search for a cure for their beloved daughter.
Chemical structure of bedaquiline. Credit: Wikimedia Commons
The RNTCP’s hindrances
India’s Revised National TB Control Program (RNTCP) frequently tries to explain away the great injustice they perpetrated against this young woman. Sometimes, they hide behind a meaningless scientific facade, claiming there was not enough medical evidence to give Shreya the drug.
Most often, they cloak themselves in the respected mantle of public health responsibility and talk about preventing the development of resistance to this precious medication and how they need to “protect” bedaquiline in case people need it in the future. They almost never mention how they failed to protect Shreya, whose life depended on receiving bedaquiline as soon as possible.
No. Instead of protecting her, the RNTCP forced Shreya – who was fighting for her life – to have to spend some of her last days on earth fighting against the formidable bureaucracy. Because even though she should have been preparing for university, she instead asked her father to prepare for court, telling him that even if it was too late for her, she wanted her suffering to have meaning.
She was blessed by a family that listened to her. Her court case asserting her right to be treated with bedaquiline was taken up by human rights champions, Anand Grover and his colleagues at the Lawyers Collective. They filed a suit against the RNTCP in the Delhi high court, where over the course of several weeks, Shreya’s fate hung in the balance.
The court case
The RNTCP put up quite a fight to keep bedaquiline out of the hands of this dying girl. First, they claimed Shreya did not live in one of the cities where bedaquiline was approved for use.
When Shreya’s family moved to one of those cities, they then claimed that Shreya needed to prove she actually had highly drug-resistant TB, even though they themselves had the medical test results documenting such resistance from their own laboratories.
They then claimed she did not have a chance of being cured because there were not enough drugs with which to pair the bedaquiline to stop her TB. They did not want to “waste” the bedaquiline trying to save her life.
Advocating for Shreya was one of the best – and also the bravest – TB physicians in India, Dr Zarir Udwadia. He was backed by a team of international experts who could not help but be moved to action when they heard about Shreya’s fight.
Although Shreya eventually prevailed, with the judge ruling that the RNTCP must provide access to bedaquiline for her, the victory was hollow. Because of the months it took to overcome the endless barriers erected by the RNTCP, Shreya’s lungs were destroyed. Bedaquiline, along with other medications, was able to kill the TB germ. But nothing could be done to make the lung cells healthy again: only scars remained, leaving her breathless.
Delhi high court. Credit: PTI
Not much has changed
And perhaps what would be most troubling to Shreya: access to bedaquiline for people in India has not improved. Since 2015, only about 2,000 people in the country have received bedaquiline, a mere 3% of those in need of the drug using conservative estimates.
This is the case even though the drug is free. Even though it has been recommended for treating drug-resistant tuberculosis since 2013. Even though, almost 65,000 people in India develop drug-resistant TB each year and a mere 46% of them will be cured.
Shreya Tripathi did not need to die, and there is nothing more devastating than the senseless death of a child. In spite of having better lifesaving drugs like bedaquiline, every day, the list grows with the names and suffering of the young, who, like Shreya, officially die of multidrug-resistant TB but whose cause of death is far more insidious.
Taken alone, they are single points of heartbreak. But when viewed all together, they form something that should ravage our collective consciousness, not only because they did not need to die but because, in essence, we helped kill them.
Dr Jennifer Furin is an infectious diseases clinician and medical antrhopologist. She is currently a lecturer at Harvard Medical School. She was one of the experts who had filed an opinion in the Delhi high court in Shreya’s case, regarding giving her access to bedaquiline.