Explaining to a patient and his family, why and how to take the medicines, before starting the TB course
It was World TB Day and we at Innovators In Health (IIH) were planning to organize a football match in one of our intervention blocks to raise awareness for Tuberculosis. Amidst all the organizing, I had a chance to speak to the coach of one of the teams. He began telling me about his journey. Through our conversation, it was revealed that he, himself had been diagnosed with TB at the age of 14 and as a result of his deteriorating health back then, he had to stop playing football.
What surprised me, and hit me, rather late I would admit, was that TB is so entrenched in the lives of the people here. Everyone knows someone who has had TB at least once in their lives. In the last year, from January 2021 to January 2022, there has been a total of 1,32,690 cases notified overall in Bihar. Within the area we work, in Samastipur district, a total of 6,800 cases came up in this duration.
I remember being introduced to TB – the causes, symptoms and treatment for the first time when I opened the IIH website. It felt surprising to find the extent to which this illness affects communities and how dangerous it is not only to the life of the person affected but also people around.
Living in Delhi, all my life, my assumption was this wasn’t a big concern. Shifting to Dalsinghsarai in Bihar and surrounding myself with our on-going work on TB really opened my eyes. A completely curable disease with free of cost treatment at government healthcare centers, is capable of ruining an entire family.
Among the five values that IIH lives by, two of them are, “taking care to the patient’s doorstep” and “never leaving a patient behind“. From the diagnosis till complete treatment, the battle with TB is an extremely lengthy one. Quite often, due to this lengthy process, patients leave the treatment mid-way causing further complications. Therefore, we try to provide facilities directly to their home, never leave them during their treatment process and even after they are cured.
I have had a chance to see these values from quite close and how it not only helps people but also saves lives. Along with that, it encourages patients to take care of themselves and make further attempts to raise awareness among other people they know. The entire process is interesting to understand, and to also map out the potential challenges that arise throughout the journey. Here is how it looks:
Finding symptomatic TB patients
The first step is to find symptomatic TB patients. The term commonly used for them, is ‘referrals’. There is immense weightage placed on finding referrals rather than confirmed cases. The reason is simple – if you find people with symptoms matching with TB early on, they will be able to be diagnosed earlier.
If they get tested positive, they now have someone who will support them throughout the course. Similarly, if they are tested negative, then they will be able to investigate the reason for symptoms and be receive proper treatment to cure them.
Referrals are found with the help of the community. Key members such as the ASHA and Aanganwadi workers have information about the health of members within their villages. Similarly, people who have been treated previously, know the symptoms from their personal experience. So, when they provide referrals, its most often accurate. Once identified, they pass it onto our panchayat and block level coordinators.
Visit by field staff members
Once our staff members have the names of referrals, they do a home based symptom screening. These potential symptoms could be cough for over two weeks, blood in sputum, fever every evening, immense sweating, drop in appetite, chest pain and/or any swollen gland in any part of the body. All our referrals are screened for this.
The screening also aims at understanding if the client has any other co-morbidities and if they consume alcohol, tobacco or any other substances. This provides a window to highlight all possible symptoms and the means in which a potential treatment course may have to be undertaken if TB is confirmed.
Collecting sputum for testing
At the time of screening, if the client highlights most of the TB symptoms, they are given a sputum box to collect their sputum for further diagnosis. The challenge at this step is that not all clients are able to produce sputum. Along with that, quite often the first attempt is not enough to send in for diagnosis. This is a process that is repeated a couple of times to get the correct sputum quality.
TB diagnosis and support through treatment
The sputum is sent for diagnosis to a government health facility where both the diagnosis and the treatment for TB is free of cost. Once a patient is tested positive, they have a medicine regimen that requires close adherence and monitoring. Quite often, each patient has a treatment supporter attached with them to help with maintaining the medicine cycle. This person can be a family member, a neighbour or a relative, along with the ASHA worker.
Our staff members provide the medicines to the ASHA. The medicines are broken down week-wise and a patient is only given doses for a week. It is important to understand the reason behind this. The TB course is lengthy and there are often many medicines that a single patient is required to consume. Having someone to support them offers help but also prevents them from dropping off the treatment which can cause further complications.
Follow ups to ensure continued treatment
Every 15 days, regular follow-up is done with each patient, treatment supporter and ASHA. The medicines are matched to see if any day has been left, the treatment card is verified for potential discrepancies, if any, and the patient is checked for any possible adverse drug reactions as a result of the medicines.
Our patients go through regular follow-up by on-ground staff throughout the treatment journey. Once the patient is completely cured from TB, we continue interacting with them. Every time we visit that village, we meet them and their families.
This is the system; no patient is left behind and our aim is to get them the best possible treatment with as little of theirs to lose.
My understanding over this time is that TB is difficult for both the patient and their family. But if you have someone to not only guide you through this process but also be there with you emotionally, it becomes a lot easier to go through it. This is the determination I see amidst my entire team every single day, when they step out to visit a patient.