Twenty-five-year old Hanif lives with his wife, mother and two children in a small ground-floor apartment, in the Govandi area in Mumbai. In 2012, Hanif was diagnosed with extensively drug-resistant tuberculosis, or XDR-TB, a form of tuberculosis that is resistant to the standard drugs for treatment, as well as some second-line drugs. At the time, he worked as a salesman in a shopping mall in the city. “Initially I was okay and was on treatment, energetic, and had a normal weight, and could lift heavy things,” he said. “But then suddenly my mind became blocked, I stopped interacting with people, I used to talk senseless—blah-blah-blah—and would trouble everyone a lot. I used to feel like a living corpse. I never felt that I was alive.” For four years, he received treatment at three different clinics in the city. But the treatment was not regular, and as a result, ineffective. One of the clinics, for instance, which provided him with drugs, “was a charity dependent on donations, and sometimes would run out of money.”
According to a briefing paper published in October 2016 by Médecins Sans Frontieres (MSF)—also known as Doctors Without Borders—nearly 5,000 people die of TB everyday, and close to 41 percent of those who contract the disease are neither diagnosed nor treated. With more than a quarter of the world’s patients, India has the largest burden of TB in the world. This number may well be higher: in its 2016 report, the World Health Organisation noted that India had been under-reporting TB for several years. The country reported only 56 percent of its TB burden in 2014, and 59 percent of that of 2015. Treatment for TB is often long, arduous and expensive: patients have to spend a minimum of nine months under it. During the course of the treatment, they have to take about 10,000 pills, and are given painful daily injections for six to eight months. Only half of the patients that begin treatment are successfully cured. With XDR-TB, the strain that Hanif has, the rate falls to about 28 percent. According to the MSF paper, the world is currently 150 years behind the WHO’s 2030 targets to reduce the deaths from and incidence of TB.
In the past two years, two promising drugs to treat XDR-TB have been developed— Bedaquiline, in 2012, and Delaminid, in 2014. The World Health Organisation has approved both drugs for treatment of some groups of patients with XDR-TB. But the pharmaceutical companies that developed the drugs have not yet obtained permission to ply them in most countries—many of these countries have also not amended their regulations to include the new drugs. As a result, access to the drugs is restricted and highly unlikely for most patients currently suffering from the disease—the MSF paper notes that only 5,738 patients have had access to Bedaqualine outside clinical trials, and 405 to Delaminid. In India, Delamanid is only available through “compassionate use”—where a special application for importing the drug needs to be made for each patient to the drug authorities of the nation, to allow the patient to obtain the drugs directly from the manufacturer. The application process is long, and often results in substantial delays to beginning treatment, which in turn can adversely affect the patient’s chances of survival.
In March 2016, ahead of World TB Day, the government of India announced that it would launch pilot programs for Bedaquiline treatment at six sites in India. But the availability of the drug has not yet been scaled-up beyond these sites, causing widespread alarm in the international public health community, Vidya Krishnan, the health and science editor for The Hindu, reported in an article published on 6 November 2016. “If India does not move, the world does not move. We cannot do much without India,” the director of the WHO’s Global Tuberculosis Programme told Krishnan. Apart from the government pilot program, access to Bedaquiline is also limited to compassionate use.
Hanif is one of the few patients in India who is being treated with the new drugs, at the MSF’s clinic in Mumbai. After he enrolled at the clinic in early 2016, he was tested extensively in order to determine which drugs he was resistant to. Then, MSF made a compassionate-use application for him. The drugs took three months to arrive. “I was eagerly waiting for them,” he said. Earlier, despite various rounds of treatment, Hanif said he had a low appetite, and that he had fever in the evenings and experienced chills. Within days of starting the treatment, however, his condition improved. Hanif said he now spends more time with his children, whom he earlier avoided for fear of infecting them. “I want to take good care of them,” he said. “And offer them a better life than what I have experienced.”
“It’s rewarding to see people come out of their illness, be happy, getting back to their job, getting out of stigma,” a counselor who works with Hanif at the clinic and has followed his recovery process, said. But, she added, “The hardest part is to accept that there will also be a few deaths every now and then.”
The photographs in this essay were commissioned to Atul Loke as part of MSF’s efforts to chronicle Hanif’s story.
Atul Loke is a photojournalist with Panos Pictures, based in Mumbai. His work has been published in major international and national magazines and newspapers. He is currently working on a personal book project in Mumbai.