From patient to survivor

47-year-old MVSS Sarma has been working as a treatment coordinator (TC) with Project JEET (Joint Effort for Elimination of TB) for more than a year now. His agenda is simple – support a tuberculosis (TB) patient on their journey from “cough to cure”. From the time a patient is diagnosed with TB, until they complete their treatment, Sarma remains an important part of the journey to recovery.

He starts by establishing a rapport with the patient and his family. “Communication is an integral part of my job,” says Sarma. “I have to ensure that the patient undergoes all follow-up tests and takes their medicine as per National TB Elimination Program guidelines.” This means that as TC, Sarma “adopts” a TB patient to ensure they benefit from JEET’s continuum of care. When treatment starts, Sarma explains how to take the medication, and the importance of regular and correct dosage. He also describes the side effects of the TB drugs, which can be worse during the first intensive, two-month phase with four drugs that precedes the four-month continuation phase with only two drugs. Drop-out rates usually occur during the intensive phase.

Apart from the side effects, a patient’s journey with TB has other challenges. Sarma elaborates, “TB is a stigmatic disease. It has been associated with many social challenges, including abandonment of TB-infected patients, in some cases entire families. Stigma is exacerbated by financial constraints due to loss of livelihood or inability to work due to weakness.” Patients diagnosed with TB can get depressed and lose hope. And this is where Sarma’s role in accompanying a TB patient on the road to recovery becomes critical. Through counselling and psychosocial support, Sarma helps a patient to cope with their illness. “While society has, to some extent, started to accept a TB patient, exceptions still exist,” says Sarma. “In my experience, the ratio of acceptance to stigmatization is about 10:2−3.” There are difficulties in the field as well, such as getting a patient to refill their prescription at a government hospital. The hospital staff can be rude and unfeeling, something that can lead to a patient abandoning treatment. Medicines can also be had from a private chemist or hospital, but at much higher costs and not all patients can afford TB treatment from the private sector. “There is an increasing need to create a separate TB drug storage system that ensures the privacy of the patient.”

Sarma’s function does not end once the treatment is over. He continues to visit the patient and their family, providing post-treatment follow-up support, which can last up to 6 months, or even longer. In this phase, Sarma also provides guidance and counselling to motivate recovered TB patients to introduce lifestyle changes, such as to quit smoking. “I feel very happy when I see a successfully recovered patient. The journey from becoming a patient to turning into a healthy survivor is very gratifying. I am thankful that I get to play a small role in their complete treatment and recovery.”

More on the JEET project.