Fifty-year-old James is all skin and bones and can barely speak coherently. He has been an injecting drug user, or IDU, for more than 30 years. In July this year, he was diagnosed with tuberculosis – a diagnosis that was made during an exercise conducted by Delhi health authorities to find tuberculosis among injecting drugs users.

The Delhi tuberculosis department in collaboration with the National Coalition of People Living with HIV in India, has been conducting active case finding exercises among people at a high risk for HIV and tuberculosis. Active case finding involves visiting at-risk communities to test for disease instead of waiting for people with symptoms to visit health facilities. In March, the programme looked for tuberculosis among sex workers and has been reaching out to communities where people might be exposed to HIV – a condition that makes people susceptible to tuberculosis. People who inject drugs who often share needles are at risk of contracting HIV as contaminated blood might be passed along on the needles.

As per a 2004 survey, there are about two million opioid users in India, which is approximately 0.7% of the total population. There is a 9.9% prevalence of HIV-infected people among injecting drug users.

Health workers conducted the active case finding exercise among injecting drug users at two non-profit de-addiction organisations in Central Delhi – Sharan and Love, Faith and Action Trust. Clinicians at the New Delhi Tuberculosis Centre at Lok Nayak Jai Prakash Narayan Hospital performed sputum tests, X-rays, and a cartridge-based nucleic acid amplification tests on 196 drug users and found that 24 – that is more than 12% – were positive for tuberculosis.

Dr Kamal Chopra, the director of the tuberculosis centre who oversaw the entire operation, said that the proportion of tuberculosis patients is very high among drug users, adding cautiously that a proper study needs to be done to understand the extent of tuberculosis disease in this group.

A global problem

High levels of tuberculosis have been established globally among injecting and oral drug users. In the 1980s and 90s, when a tuberculosis epidemic was at its peak in New York, epidemiologists established that drug users are more susceptible to tuberculosis. In fact, an outbreak occurred in a de-addiction centre in New York between 1994 and 1996. Another study found that alcoholics and drug users are 14.8 times more likely to contract tuberculosis as compared to the general population.

Other studies from around the world show that drug use undermines a person’s immune system making him or her more susceptible to tuberculosis infection. Drug use is often also associated with tobacco use, homelessness, alcohol abuse and incarceration – all of which increase the risk of contracting tuberculosis. These physiological and social factors may contribute to drug users being more infectious and having a higher risk of dying from the disease.

While India has set the target of eliminating tuberculosis in the country by 2025, health authorities have not come up with a specific strategy for how to diagnose and treat people who inject drugs. The National Strategic Plan For Tuberculosis Elimination only mentions that high risk populations identified by the HIV control programme, including people who inject drugs, should also be screened for tuberculosis.

“We have mapped out drug addicts as a biological and social high risk group,” said Dr Sunil Khaparde, deputy director general of the Central Tuberculosis Division of the Ministry of Health and Family Welfare. “We are open to ideas and would like to understand how the exercise worked out.”

Not wanting to get tested

The problem of diagnosing and treating drug users is compounded by the fact that they are often not ready to seek treatment for ill health. Much of this is because they are subject to stigma and ill-treatment at hospitals.

“If drug users go unescorted to a hospital, people treat them badly,” said Rajkumar Kashyap, an outreach worker at Sharan. “The hospital staff will keep moving them or ask them to cover their faces. No wonder they do not want to go to a hospital.”

This reluctance to get medical help has affected the active case finding exercise at the de-addiction centres. Health workers found that 315 injecting drug users had symptoms of tuberculosis but were able to test only 196 people to confirm infection, leaving 40% of symptomatic drug users untested. This is mainly because many drug users, who are homeless and live on the streets, disappeared during the exercise.

In an open space next to the Sharan de-addiction centre, one drug user sleeps wrapped in tarpaulin while others chat after taking their opioid substitution therapy. Photo credit: Menaka Rao

“We had a few people even fleeing on the way to the hospital,” said Chinmay Modi of the National Coalition of People Living with HIV. He said that the health workers had intended to screen 1,500 people for tuberculosis in 15 days, but managed to screen only 369 people.

Among those that have been diagnosed, there are many that may not take their prescribed treatments. Shabad Alam, programme manager at Sharan, has observed that many drug users at the centre who are HIV positive do not take their antiretroviral medicines. Of the 200 HIV positive patients at the centre, only about 30 are taking anti-HIV medicines.

“Many of them do not even have a place to keep their medicines,” he said. “They keep it with us and take it with their opioid substitution therapy.”

Opioid substitution therapy, which is offered to drug users at de-addiction centres like Sharan, involves giving a drug user a long acting opioid like buprenorphine under medical supervision and along with psychosocial interventions, which helps reduce drug withdrawals and cravings and reduces the likelihood of the patient resorting to illegal means to get drugs.

At Sharan, of the 10 patients diagnosed with tuberculosis, four have disappeared. Nisha, a health worker with Love, Faith and Action Trust said that none of the three patients diagnosed with tuberculosis at that centre have been taking treatment.

Many HIV positive and tuberculosis patients fall off their treatment regimens because the medicines are very strong with very uncomfortable side effects, pointed out Jina Nagangom from the Delhi Network of Positive People. This problem becomes worse for drug users, who are already weak.

“I feel a burning sensation in my stomach since I started taking medicines,” said James, who barely eats all day and lives on the street.

The lack of nutrition also leaves their bodies too weak to fight off tuberculosis infection.

Gaps between HIV and TB testing

Another hurdle in treating drug users for tuberculosis is the lack of coordination between the national HIV control and tuberculosis control programmes.

The National Aids Control Organisation is supposed to make sure that HIV positive people are screened for tuberculosis at least once in six months and that all people infected with tuberculosis screened for HIV. However, NACO only sets targets to test people for HIV, said members of non-profit organisations working with drug users. As per a 2017 report on the national tuberculosis programme, only 3% of people with tuberculosis know their HIV status.

Rajiv Shaw, project director at Sharan, said that this is because NGOs working with drug users operate on shoe-string budgets making it difficult to pay for their travel and to escort them to referral hospitals for diagnostic tests.

“When referrals to test for TB are done, it is usually outside our budget,” he said.

Since December 2016 , antiretroviral therapy centres treating HIV patients have also been carrying out tuberculosis tests and this single-window system is slowly being expanded.

Meanwhile, the tuberculosis control programme has been reluctant to register people who inject drugs because the treatment default rate is very high, said Dr Beena Thomas, a scientist with the National Institute for Research in Tuberculosis in Chennai. “The programme has not thought of tuberculosis among injecting drug users,” she said. “There are very few studies with them on TB.”

One-stop treatment

The World Health Organisation believes that people who inject drugs should be offered all health services in one place – opioid substitution therapy, prevention and diagnosis and treatment of HIV and tuberculosis, distribution of clean needles and syringes, vaccination and treatment for viral hepatitis and condom disbursal.

“The package has proven to be efficacious and cost effective in reducing the harms associated with injecting drug use,” the WHO said in its 2016guidelines on treating drug users for HIV and tuberculosis.

The National Institute for Research in Tuberculosis is supporting a study to test such a system of one-stop treatment in Mizoram. In the study, said Thomas, researchers made tuberculosis detection and treatment services available at a civil hospital that has a de-addiction programme.

But drug users need more, said Loon Gangte, a former injecting drug user who is now with International Treatment Preparedness Coalition. Any programme to help drug users must also include skill training to help them recover their lives and jobs and integrate into society.

Gangte said that drug users were unlikely to adhere to their treatment regimens unless their social conditions also improved.

“Unless we focus providing roti, kapda aur makaan (food, clothing and shelter) for these people, none of these strategies will work,” he said.