About 200,000 people diagnosed with tuberculosis in India, which comprises 13% of the total number each year, never start treatment, giving themselves a possible death sentence. These individuals are also at high risk of spreading the disease to their family and neighbours, with studies estimating that a person with untreated tuberculosis usually infects an additional five to 15 people.

Tuberculosis has been a largely curable disease for more than five decades, and yet it is still a leading killer. This problem becomes less puzzling with an understanding of the larger situation of tuberculosis care in India.

World Tuberculosis Day, observed on March 24, has particular relevance in the country, which accounts for one-fourth of all individuals who contract the disease worldwide and one-third of those who die from it.

For decades, the government of India has provided treatment for free in public clinics. In recent years, it has also invested in improving health services by promoting use of electronic medical records and introducing more advanced diagnostic testing. While the government’s attempts are laudable, it is overlooking an avoidable human toll by neglecting diagnosed patients who don’t start treatment at all.

Part of the reason for this oversight is lack of understanding about why this problem happens. Many doctors and public health officials may naturally assume that not starting treatment is the patient’s fault. For example, perhaps the patient harbors misconceptions about the benefits of medical care or isn’t taking the diagnosis seriously enough.

Bureaucratic maze

In a recently published study, while acknowledging that some of these personal barriers are relevant, we show that for many patients, failure to start treatment results from their own negative experiences with government health services. Tuberculosis patients receiving care in India’s public clinics come from the poorest strata of society, with more than half living on less than $2 a day.

Fearful after experiencing weeks to months of cough and weight loss, they often travel long distances from their villages to city hospitals, looking for an answer. Instead, what they find is an intimidating, confusing, and ultimately frustrating experience.

Stressed health providers hurriedly send these patients from one outpatient clinic to another. After coughing up a sample of phlegm to get tested, patients return only to find that they can’t get their test results because a computer system is down or a lab technician isn’t available to give it to them. Even when patients are able to pick up their test results, they are usually referred back to public facilities in their villages to start treatment.

The message that tuberculosis is a curable disease with free treatment available needs to be amplified. Credit: Noah Seelam/AFP

But there’s a problem: no one gives them addresses or directions to these clinics. Even worse, in rare cases, providers scold and stigmatise patients. Facing these hurdles, patients drop out of care, even before starting treatment, due to exhaustion and resignation. As a family member of one patient who died without starting treatment told us, “After running from pillar to post, we just gave up and went back home.”

Revolutionising care

To be clear, we are not saying that patients should avoid government health services. On the contrary, a review of several studies suggests that the quality of tuberculosis care is dismal in much of India’s private sector and probably better in government facilities. In addition to providing free treatment, India has developed a robust cadre of specialised personnel throughout the country who monitor and support more than 1.3 million tuberculosis patients in the public sector every year. By supporting all patients to start treatment promptly, the government programme can do even more to bend the curve of this deadly epidemic.

What practical steps can the government take to ensure that all diagnosed patients start treatment? First, health providers should be systematically trained to care for patients in a manner that is personalised, humane, and free of judgment or stigma. Key messages – that tuberculosis is a curable disease with free treatment available – should be communicated immediately. Such messaging can make a world of difference to patients who are worried about their deteriorating health.

Second, government health services need to be streamlined and made more patient-friendly. For example, even when health providers want to find patients who did not return to start treatment, studies suggest that they are unable to track one-third to one-half of such patients, because of poorly recorded patient phone numbers and home address information. Notifying patients of their tuberculosis diagnoses via automated text messages may ensure they come back. When patients are referred to a village clinic, providing them with the address, a nearby landmark, and health provider phone numbers will help ensure patients can actually reach the clinic to start life-saving treatment.

What hinders our ability to solve this predicament is not a lack of medical knowledge, but perhaps more importantly, a failure to care for patients as people. While the disease disproportionately affects the poor and vulnerable, anyone who breathes is at risk for getting this airborne infection. If we keep in mind that the next patient could be us or one of our family members, we may be more inclined to treat all patients with the dignity they deserve. Let’s confront this deadly epidemic. We don’t just need a revolution in the science of tuberculosis. We need a revolution in care.

Ramnath Subbaraman is an infectious diseases physician and an assistant professor in the Department of Public Health and Community Medicine at the Tufts University School of Medicine, Boston.

Beena E Thomas is a consultant social scientist and former head of the Department of Social and Behavioral Research at the National Institute for Research in Tuberculosis, Indian Council of Medical Research, Chennai.