दीदी, इस बिमारी से कोई बचता नहीं है। हमने तो बहुत करीब से देखा है। मुझे डर है की मैं ठीक नहीं होऊंगा।
[Didi, nobody survives this disease. I have seen it up close. I’m afraid that I won’t get well].
These were the words spoken by Rajan*, as he sat across from me in his small one-room house. His mother was sitting beside me, weeping silently. Rajan is a 19-year-old boy who has recently started his treatment for Multi-drug resistant (MDR) tuberculosis. He lost his father about five months back who was also suffering from MDR TB. To understand the causes of drug-resistant (DR) TB and to carve out a journey to help DR TB patients to recover, I was collecting patient stories across the 20 blocks of Samastipur district where Innovators In Health has been working.
The stories of all the patients and their families I interacted with, had some common patterns. It got me thinking. The Government of India, through the National Tuberculosis Elimination Programme has aimed at eliminating TB by 2025. However, the reality as seen on ground is alarming and we are far from eliminating it.
Normal TB has built into DR TB, MDR TB and even Extra-Drug Resistant (XDR) TB. For normal TB, there is a list of medications that have a certain number of side-effects. If handled with care and proper nutrition, the individual will start to feel a lot better within the first month. In terms of drug-resistant TB, as the name suggests, there are a few drugs which don’t work and in MDR and XDR, the number of medicines not working just increases.
In contrast, the medicines that are administered are extremely difficult, some through injections and some have serious side-effects that then need to be controlled through other medicines. As highlighted itself within the India TB Report 2019, “Tuberculosis strains with multi drug and rifampicin-resistance (MDR/RR-TB) are more difficult to treat than drug-susceptible TB. This is considered to be one of the major challenges to progress towards the country’s targets to end TB by 2025.” The strategy obtained by the government of India is extremely detailed and is divided into 4 segments: Detect – Prevent – Treat – Build (DPTB).
The main aspect of this program is to detect potential TB patients early on, especially from high-risk zones such as those living in extreme poverty, prisoners, migrant workers, HIV/AIDS positive people who are more susceptible to contracting TB. Along with this, all the medicines provided for TB treatment along with the means of diagnosis are completely free of cost for both patients seeking care in the public sector and the private sector. During the entire course of treatment through the Nikshay Poshan Yojana, a TB patient is eligible for Rs. 500 per month to support them through the treatment journey.
Despite all these provisions put in place by the government of India, why is TB still such a pressing issue, and why are the cases of DR TB and MDR TB increasing manifold? The answer to this question was in the patient and family stories that I have been collecting. As mentioned before, all the stories have the same cause and effect relationship and it is precisely because of this that despite a fully-functional ongoing program, eliminating TB would be a huge challenge for the government.
The first treatment option is village doctor or private practitioner
When an individual first begins to get symptoms such as cough, fever, extreme weight loss, and such others they go to their local village doctors who often prescribe anti-biotics or in extreme cases steroids. On taking these medicines the disease subsides for a while making the patient feel better and trust the doctor providing this treatment. For example, many of our patients have highlighted how these doctors give injections at home and for about two weeks they feel much better. However, when the disease relapses again, a few weeks later, the symptoms are more intense and the local village doctor gives up and advises them to go to a hospital.
Communities within this area are often initially skeptical of government hospitals so the next option they choose to go to is a private doctor for treatment. In many situations, private doctors detect TB very late, and even if they detect it in time; the entire process of diagnosis and providing medicines is extremely costly and individuals end up spending a lot of money just to get diagnosed properly. For instance, when Rajan was talking about his father he mentioned how they almost spent Rs. 50,000 in a private hospital. Despite spending all this money, till the very end TB was not detected. This cycle of going to local doctors or opting for private physicians delays the treatment process and makes it very difficult to obtain proper treatment.
Reaching government facilities in emergency situations
It is only when the disease is at its peak and patients have nowhere to turn to do they opt for treatment in government hospitals. On arriving even though the diagnosis and medicines are free of cost; since the disease is so extreme, treatment becomes very complicated.
Extreme side effects, especially for DR TB treatment
TB is a vicious cycle. Those with low immunity are more susceptible to it and in turn, those who have low immunity have greater side effects. Some of the common side-effects of TB treatment are vomiting, dizziness, and gas build-up in the stomach. DR TB has a few extreme side effects such as a possibility of losing eyesight, hearing, and extreme load on the lungs. These are side-effects that do not happen to everyone however it becomes very difficult for a patient to consume medications when they have all these problems. The essential assumption becomes, that they are not getting better and therefore choose a different form of treatment which invariably aggravates the situation. Many of our patients wonder if the medicines are even correctly working if the side effects are so extreme. These side effects hamper drug adherence.
Lack of drug adherence
As a result of the immense side effects and the long length of the treatment, often patients find it very difficult to adhere to this complicated treatment course. Very often the number of medicines a DR TB patient is supposed to have at any given point in time varies from 7 to 11. Keeping a note of all these medicines becomes very complicated for any individual and in situations like these lack of adherence becomes a key problem, complicating the disease further.
Out of stock medications within the facilities
Medications for TB, especially within DR TB and MDR TB are often very expensive and difficult to obtain, in which case within the public facilities there are often shortages. Patients are prescribed medications that are not available and asked to take it from private. Those who can afford do that and continue taking their medications but those who are not able to buy them are left without any support. This again hampers the treatment and often comes in the way of drug adherence.
Through our work at Innovators In Health, what we have realized is that along with the provision of the government providing free diagnosis and free medicines it is imperative to support the patient throughout the journey
Firstly, to get them to proper care-facility at the beginning itself so that they do not waste time and waste money on a treatment that is in their right and also one that is supposed to be free of cost. Along with that, supporting them through their treatment journey is crucial through counselling and repeated doctor’s advice whenever needed so that any concerns can be raised early and they maintain drug adherence. Our entire model as highlighted in one of my previous blogs demonstrates our entire process; making it easier for patients to receive care at government institutions whenever they need it. It is for patients like Rajan who believe that they may never get okay from a disease that in reality is completely curable.
*Names changed to maintain confidentiality
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