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.