The global battle against tuberculosis (TB) will be won or lost in India because most TB patients live there. Last month, we — at the Delhi Network of Positive People (DNP+) — lost a member of our staff, a fierce HIV activist, to TB.
After decades of activism that made HIV treatment accessible, Anita (name changed) died painfully and gradually, on April 30; there was no help forthcoming from the authorities. Her struggle exemplifies the monumental challenges faced by India’s TB community in accessing treatment. India’s TB community loses around 80 patients every day to drug resistant (DR) tuberculosis, a deadlier form of the disease, where the bacteria is resistant to anti-TB drugs.
India released data from the largest national DR-TB survey ever conducted by any country. The survey found that more than 6% of all TB patients in India have multidrug-resistant TB (MDR-TB). Based on data in the Global Tuberculosis Report 2017, an estimated 147,000 people have MDR-TB in India, accounting for a fourth of the global burden. Out of them, 30,000 patients need immediate access to better drugs and diagnostic facilities.
Anita, a familiar face among HIV activists in Delhi, was diagnosed with DR-TB in September 2016. It took 15 visits, spread over four months, to the All India Institute of Medical Sciences to get the results of the crucial drug-sensitive test that would help determine the most rational regimen to be followed after establishing what drugs she was resistant to. During this period, she was on presumptive treatment which caused her condition to deteriorate. The toxic cocktail of drugs prescribed to her caused persistent nausea, psychosis and depression — known side-effects of the deadly disease. By April this year, this 49-year-old firebrand activist was reduced to 28 kg; rapid weight loss is a hallmark of TB, giving the disease its historic name ‘consumption’ because it eats away at the person.
In HIV, patients who are put on anti-reterovirals start getting better almost immediately. In DR-TB, much like cancer, the drugs are toxic and a significant portion of the treatment is about managing side-effects. In Anita’s case, the drugs caused extreme nausea, which does not allow patients to develop an appetite, cause rapid weight loss and inevitable death. The disease gradually consumed her will to live.
Anita contracted TB because she worked among TB and HIV patients. In 2005, the government rolled out free generic antiretroviral therapy, or ART, for HIV patients, turning a death sentence into a manageable disease. However, a new problem arose that has not been addressed in decades.
ART centres, where people living with HIV are treated, do not strictly implement infection control measures for TB prevention. TB, being the top opportunistic infection among HIV patients, is not incidental to health-care workers like Anita who are constantly exposed to patients with DR-TB. Yet, people who work with DR-TB patients are not offered Isoniazid preventive therapy and N95 (respirator) masks, that reduce the risk. After years of such work, she was diagnosed with pulmonary DR-TB.
According to recent government data and estimates, there are nearly 1.5 lakh patients with DR-TB in India of whom about 20% succumb to the disease. In the past few years, the government has recognised DR-TB as a public health threat and shown the political will to address the epidemic. Yet, as Anita’s story illustrates, there is still a long way to go.
Globally, a number of efforts are now under way to provide regimens containing new classes of TB drugs such as bedaquiline, pretomanid, and delamanid which offer hope to DR-TB patients. Despite some positive developments such as new drugs, screening tools and medicines, we are losing loved ones every day. India’s TB community is grieving. As affected communities, we want to encourage our government to offer health-care workers like Anita, the most effective regimens at the start of their treatment so that they have a greater chance of a cure in the future.
Loon Gangte is an HIV treatment activist with the International Treatment Preparedness Coalition (ITPC)