Tuberculosis: A Disease of the Poor?
Once upon a time, Mycobacterium Tuberculosis (TB) was one of the most talked-about diseases in India. Today, it has become a disease of the past, or so it seems. In fact, many of us surprisingly ask, “Does TB still exist?”
TB affects everyone. However, in the past few years, it has come to be widely known as a disease of the poor. Perhaps, it is this reason that it appears to be an invisible disease for so many of the privileged lot, but is a painful casualty for others, especially from the poor section who dwell in a single room, malnourished, with compromised immune system, and heavily overworked against their physical capacity.
The poor are victim of their circumstance. Poorly ventilated and single room house, malnourishment, and limited access to healthcare is what gut-wrenching acute poverty looks like. This very circumstance aides the TB bacteria in spreading easily across the whole family or community from just one source and further reduces the resistance to the disease.
Mahesh Sahani was shivering and trembling with pain, murmuring, “please someone cure me”, his eyes brimmed with tears.
His Tuberculosis (TB) and HIV debilitated him for months; unable to work, his family of four including two children now struggle to arrange even a square meal for themselves.
His wife Manjula Devi is also affected by TB and HIV but, her TB is in the recovering phase.
Their three-year-old son is also affected by HIV and the report of their youngest three-month-old daughter is awaited.
This is the shared tragedy of many poor households in the Dalsinghsarai subdivision of Samastipur District, Bihar, India.
Ganesh Sahani, 30, passed away due to TB after a month I met him.
Ganesh was working at a stone crushing factory in Chennai, a city in southern India. According to the villagers, thirty people died of tuberculosis in their village and all of them were workers in the same factory.
From the last few months, Ganesh has had no income. His family, including three children, depends on the help received from his wife’s family. They live and cook in a small one-room house.
A report released by the World Health Organisation in October 2019, India accounts for about a quarter of the global TB burden. In 2018, TB affected 2,690,000 in India alone and killed over 449,000 people
Of those who succumbed to TB, an estimated 9,700 were also HIV positive.
According to TBFACTS.ORG, India is also the country with the second-highest number (after South Africa) of estimated HIV associated TB cases.
In March 2017 the Government of India (GoI) announced the National Strategic Plan (NSP) for the elimination of TB by 2025. Given the disease burden of tuberculosis in the country and rampant poverty, government’s promise looks a little less than achievable.
Elimination of TB means there should be less than one case of TB for a population of one million (10 lakh) by 2025, according to the World Health Organisation (WHO).
Soni’s younger sister is also affected by Extra Pulmonary Tuberculosis (EPTB).
Extrapulmonary tuberculosis is tuberculosis (TB) that occurs in an organ other than the lungs. In EPTB, mycobacterium tuberculosis bacilli, most commonly invade lymph nodes (glands throughout our body, like the neck, underarm, and around thigh).
The parents of 20-year-old Ashish Paswan, who is suffering from TB, sleep just beside him. I asked them, “why do you sleep beside him? You too can get affected.” His mother replied, “I can’t leave my son alone. He needs me all the time.”
According to neighbours, Sunita’s 17-year -old brother went through psychological shock after their mother passed away, Their father works as a migrant daily wage worker and hardly earns enough to support his children. Sunita earned these brinjals (in photo) in return of the work she did on the farm of a big landowner.
Sapna, a 16-year-old, couldn’t appear for her 12th exam as she had to take care of her father, as her other family members are mostly away from home, earning a livelihood to sustain the family. Her mother works as a daily wage labour at a big landowner’s farm. Her elder brother lives in Ghaziabad with his own family. He earns a paltry sum, but still manages to send some money back to the village.
According to the World Health Organisation, “Multidrug-resistant TB (MDR-TB) is TB that does not respond to at least isoniazid and rifampicin, the two most powerful anti-TB drugs.”
Drug resistance develops when patients with TB are mismanaged or their six-month-long course of regimen is interrupted.
However, it so happens that as soon as the patients feel better, they resume their work as daily wagers, as earning money is a higher priority for the people in this poverty-stricken area. Resultant of which, their regime of drugs course get interrupted and their TB further evolves into deadlier MDR.
In Dalsinghsarai subdivision of Samastipur, the team of Innovators in Health (IIH) keeps visiting patients on a regular basis to make sure that they are having their medicine regularly.
IIH works with the public health system to actively identify possible cases of TB, arrange for diagnosis, ensure the completion of treatment, and mobilize communities to report possible cases of TB to them.
MDR TB in India is a six-drug regimen, with an intensive phase of 6–9 months and a continuation phase of 18 months; the total duration of treatment is about 24–27 months.
The treatment itself has various side-effects on patients. The major adverse effects include neurologic side-effects (depression, convulsions, consciousness, psychosis, suicide), hepatitis, rash, renal toxicity, and auditory toxicity.
15-year-old Geeta, an EPTB patient, is on medication and appears to be getting better. She had to quit school due to her condition. Since her father is handicapped, she has to help her mother with the chores and take care of cattle, all this while battling the life-threatening disease.
Mahendra’s wife ekes out a livelihood for both of them by running a snack shop.
Gomti Devi has been ill with perennial coughing and difficulty in breathing, for some time now. She has apparent symptoms of TB. Her daughter Anita*, who was working in Ludhiana, along with her husband, left her job to take care of her mother. She says, “I won’t return to Ludhiana until my mother gets better.”
Patients with TB are unable to work or attend school. In many instances, patients’ carers also have to give up their job, as in the case of Gomti Devi. This results in a significant loss of livelihood for the family or reduce a child’s future potential earnings.
Chhoti Devi has been cured of TB, but she has lost her three-year-old child. She was affected by TB when she delivered her child and she couldn’t breastfeed him. Her in-laws ostracized her from the family and the village. It was only after the intervention of IIH that they accepted her.
According to the World Health Organization’s Global TB report, around half a million (five lakh) tuberculosis cases went unreported last year in India, which is among the top eight countries with the highest incidence of the disease.
As per the TBFACTS.ORG, about 40% of the Indian population is infected with TB bacteria, the vast majority of which has latent TB
However, as a minor relief, the number of tuberculosis patients in India was reduced by around 50,000 in 2018, as compared to the previous year.
Can we adequately address the situation of poverty-stricken people who suffer gravely and are killed due to TB? People from Economically Weaker Section struggle between eke out livelihood and visit the hospitals even as their bodies tremble with pain. Even in places, TB treatment is free, there are other costs such as travelling to the hospital and maintaining a proper diet, that the poor has to incur.
With so many unresolved issues surrounding this deadly disease, one is forced to wonder if India would be able to reach her goal of 2025.
P.S. Subjects in the photos were informed about the purpose of photos and their consent was taken.