National News

India should heed a teenager’s historic fight for lifesaving tuberculosis treatment

Malala Yousafzai and Greta Thunberg have shown us the formidable power of a single adolescent girl with determination. Shreya Tripathi of India, who didn’t live to see her 20th birthday, belongs with Malala and Greta in the pantheon of teenagers whose unswerving principles have brought the powerful to their knees.

In late 2015, when Shreya was 16 years old, doctors told her that the tuberculosis she had been living with for four years was incurable. Of 2.7 million Indians with tuberculosis, she was one of 135,000 who suffered from a strain that resists standard drug treatment, known as drug-resistant TB. The natural remedies of Ayurvedic medicine were recommended. She was, in effect, given a death sentence.

Months later, Shreya read newspaper accounts about a revolutionary new oral drug called bedaquiline, the first new TB drug in almost 50 years. It had been shown to save lives without any of the brutally painful and toxic injections of outmoded regimens she had already endured. Her father, Kaushal, was determined that she would get it.

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The two traveled 30 hours by train from their home in the eastern state of Bihar to Mumbai. There she was examined by renowned chest physician Dr. Zarir Udwadia, who urged the Tripathis to visit a New Delhi government-run tuberculosis hospital, one of just six sites in the country with access to bedaquiline.

Another arduous rail journey ended in bad news: Shreya and her father were told that only residents of New Delhi were eligible to receive the new drug.

By this time, chronic weakness had forced Shreya to give up going to secondary school. Though confined to a wheelchair, she was determined to fight for her life.

“It was then I told Papa to go to court,” Shreya told a journalist.

Her case was taken up by Anand Grover of the non-profit Lawyers Collective, who argued that by blocking Shreya’s access to bedaquiline, the government was violating her fundamental rights to life, health, and equality as guaranteed by the Indian constitution and international human rights law.

Related: Ending tuberculosis: we can get there with a new roadmap

Expert witnesses testified that Shreya qualified for immediate treatment with bedaquiline under the government’s medical guidelines, both for her own health and to stop the spread of the airborne disease to others.

“Even if it’s too late for me,” Shreya told The Guardian, “at least other patients will benefit from it. Just imagine how hard it must be for really poor people to get this drug.”

On January 20, 2017, the High Court in New Delhi concluded that the “domicile or residence of the patient” was not a sufficient reason to deny her the drug and ordered that Shreya “shall be administered” bedaquiline. But her victory was a narrow one. The court also stressed that its order was based on “the peculiar facts and circumstances of the case” and “shall not be treated as a precedent.”

Shreya finally received bedaquiline, but the delay proved to be fatal. By the time she began taking this hard-won new treatment, she was dependent on oxygen with virtually no independent lung capacity. Shreya died on October 9, 2018. She was 19 years old.

India has since proclaimed that it will eliminate TB by 2025. But the government continues to erect needless bureaucratic barriers between desperately ill individuals with drug-resistant TB and the medications that could restore their health. Fewer than 1,500 patients in India, just over 1 percent of those with drug-resistant TB, are receiving bedaquiline. By comparison, the government of South Africa has issued a directive guaranteeing access to all South Africans with drug-resistant TB. In that country, which as the highest number of drug-resistant TB cases per capita, a majority are now receiving bedaquiline.

Shreya Tripathi did not die of an untreatable disease. She spent the last third of her brief life battling a far more obdurate foe: the Indian government. Sadly, it isn’t alone in withholding bedaquiline to those who need it: Nigeria, Ukraine, Indonesia, and Latin American countries doing the same thing.

Shreya’s death should serve as a call to action to India and other governments to provide the same humane, effective treatment to their citizens trapped in mortal struggles with drug-resistant TB that is saving lives elsewhere in the world.

Stephen Lewis is co-director of AIDS-Free World. Jennifer J. Furin, M.D., is a lecturer on global health and social medicine at Harvard Medical School.

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