By Shailaja Tiwale
Pune: Every week, Praveen Ambekar (30) would meet Anita* (35) at the district TB centre in Pune for her counselling session. All went well until Ambekar noticed some behavioural changes in the patient during follow-up treatment.
“The untied long hair and a big dot of kumkum (vermillion) on her forehead seemed unusual. Though she has been taking medicines on time, I also noticed that she spoke only with her family. After interacting with family members, I realised that she was suffering from a psychotic disorder, one of the commonly observed side-effects of the medicines administered to treat Drug-Resistant Tuberculosis (DR TB),” Ambekar told 101Reporters.
Ambekar is one of 214 TB counsellors under Saksham Pravaah project of Tata Institute of Social Sciences (TISS). Introduced in October 2015 to address the psychosocial issues of DR TB patients and to ensure the completion of their medical treatment, this on-ground support will be phased out by next year due to budget constraints. The Global Fund, an independent and non-profit foundation, offers limited support to the project.
“It is important to understand the role of counsellors in dealing with DR TB patients. For instance, Anita lives in Vehle, about 50 km from Pune. She showed signs of mental illness, but her family thought Dev Angat Yene (a goddess) possessed her. She was not getting the help she needed,” Ambekar explained.
“I counselled the patient. The family accepted her condition, but the patient did not. So, I consulted with the doctor, who prescribed psychiatric medicines… To get her to take them, she was told they were for joint pain, another side effect of DR TB drugs. After a few months, she recovered completely, her symptoms were gone, and she started communicating with others. A couple of months later, she was cured of TB,” he said.
It took two years of follow-ups, counselling and consistent medication for Anita to recover fully, which showed how a counsellor could act as a bridge between the patient and healthcare system and ensure a sustainable and safe recovery. The situation on the ground and the fact that number of DR TB patients in India has doubled from 34,000 in 2016 to 68,000 in 2019 pose big questions for the healthcare system.
Who will play the role of counsellor once the TISS project ends? Who will address the psycho-social issues of patients? Can adherence to treatment be increased without addressing these issues? Will we achieve the goal of eliminating TB by 2025 without these counsellors?
Path To Recovery
DR TB occurs when the Mycobacterium tuberculosis becomes resistant to drugs used to treat TB. It often develops when patients do not stick to treatment or take it only partially. The treatment demands frequent changes in therapy as drugs may not respond, which prompts new drug trials. It may even take up to two years to cure patients. Severe side-effects of medication are another issue.
Of the 2,30,000 TB patients in Maharashtra last year, over 9,000 had DR TB, according to the state public health department. The total number of identified TB patients in 2021 and 2020 were 1,99,000 and 1,60,000, respectively.
To assist and guide patients during the difficult road to recovery, counsellors under Saksham Pravaah were integrated within the National Tuberculosis Elimination Programme (NTEP). The counsellors now work in all district TB centres in Maharashtra, Gujarat, Karnataka and Rajasthan.
“Tuberculosis is a known disease, but the patients and their families have many doubts after the diagnosis. Due to the daily patient load, neither the doctor nor the staff at TB centres have enough time to clear them. Here, a counsellor’s role becomes essential,” remarked Shweta Bajaj, senior project officer, Saksham Pravaah.
“The Ministry of Health and Family Welfare has also initiated counselling training for all NTEP health workers with help from the TISS and other educational institutions. Now all employees will be taught counselling skills,” added Bajaj.
A Lifeline For Rural Patients
Located almost 160 km from district headquarters Amravati is Titamba village, in Melghat tehsil. When DR TB patient Mukesh* (27) had a fever and cold recently, his father had to wait for two days to earn enough money from daily labour to take him to Amravati. Mukesh already suffered from adverse drug reactions and meanwhile, his father was worried that he is unable to eat anything due to nausea and vomiting.
Since DR TB treatment is available only in district centres, Mukesh’s father had to let go of a day’s income to take the five-hour journey to Amravati and spend more due to lack of reliable public transport.
“It is not always possible for patients from the hinterlands to travel to the district hospitals. Mostly, patients like Mukesh are unable to access medical treatment on time,” Lokpriya Meshram, Saksham TB counsellor for Amravati, said.
Even if they manage to reach the centres, they don’t get all the treatment under one roof. Sometimes, a chest physician or neurosurgeon is unavailable in the hospital and they have to visit another government hospital, or maybe wait for one more day to consult the doctor. Though treatment and medicines are free, the cost of travel, accommodation and food can weigh rural families down.
“In such cases, we guide the patients, facilitate their paperwork and help them get treatment the same day with the hospital staff’s assistance. In extreme cases, we also arrange an ambulance for them,” Meshram said.
The programme is even more important in rural and tribal areas, where the challenges faced by DR TB patients are acute due to limited healthcare facilities, lack of awareness and resources, unavailability of public transport, social stigma, poverty, malnourishment and fewer income sources.
“In Melghat, most families rely on daily wage labour for income. If the head of the family is infected with DR TB, managing two meals a day becomes a difficult task. Moreover, DR TB drugs are high doses of antibiotics. It is not advisable to consume these drugs without a healthy high-protein diet… Some patients take these medicines after eating just mahua ladoos,” Meshram explained.
“Counsellors step in here and provide nutritional support, including foodgrain and protein powder, with the help of local NGOs,” she said.
Ambekar added that during their personal visits, they come across several patients who do not have a proper shelter, food or income source. “Sometimes, patients are abandoned by their families due to social stigma.”
Though TB patients get Rs 500 under Direct Benefit Transfer Scheme, payments are often delayed and are insufficient when no other income source is available.
“In such cases, a counsellor arranges mid-day meals by linking the patient with the government’s social welfare schemes,” he added.
As per TISS data, Saksham counsellors have linked 5,893 TB patients and their family members to various social protection schemes run by the state and Central governments between September 2016 and March 2020. They have also provided nutritional support services worth over Rs 1 crore to 5,524 TB patients by raising funds with the help of NGOs and from private donors.
Spreading Awareness
In addition to providing socio-economic and mental support, the counsellors spread awareness about the communicable disease.
“In Melghat, TB patients do not wear masks or cover their mouth and nose while coughing… they participate in community events, do not seek treatment on time, approach traditional healers, or prefer black magic remedies. As a result, DR TB is spreading rapidly in the interior villages of Melghat… We counsel them about the precautions, assist in treatment and reduce the risk of disease spread,” said Meshram.
Patients also have concerns about sex and family planning, which they are uncomfortable sharing with the doctors or clinic staff. The trust built between the counsellor and patients helps in solving these doubts.
The Saksham Pravaah counsellors have become an inextricable part of the lives of TB patients in Maharashtra. From October 2015 to December 2022, they have provided counselling and psychosocial support to over 95,000 DR TB patients and their caregivers. Since the closure process is on, their numbers on the ground are going down, which has increased the patient load on the remaining counsellors and has hampered proper patient follow-up.
Asked how the public health system will cope with the imminent change, Nitin Ambadekar, Director of Health Services, Maharashtra, said: “We will examine the role of counsellors and take a decision.”
The only thing left to be seen is how the DR TB patient care will move forward in the absence of these counsellors.
(Shailaja Tiwale is a Maharashtra-based journalist and a member of 101Reporters, a pan-India network of grassroots reporters)
