Antibiotics are not enough

In 1882 Robert Koch announced his discovery of the causative agent of tuberculosis, which was a steep turn in the history of the disease. About a century later, in the 1990s, multidrug resistance to tuberculosis emerged as a potential threat to tuberculosis control programmes worldwide.¹ The US Centers for Disease Control and Prevention and the World Health Organization surveyed an international network of tuberculosis laboratories and found that in 2000-4 of the 17,690 tuberculous isolates, 20% were of multidrug resistant tuberculosis.²

Tuberculosis in India is not just a disease to be treated with antibiotics but an entity with historical and cultural roots that run far and deep. Tuberculosis is popularly known as “kshayarog” in many parts of the India because of the spitting of blood and loss of weight associated with the disease. “Kshaya” means gradual wasting or weakness and “rog” means disease, so kshayarog means a disease with gradual wasting and weakness. The term can be used for other chronic illnesses too, but it is specifically used to refer to tuberculosis in ayurvedic textbooks. This is because tuberculosis was the most common disease that caused chronic wasting when the books Ashtanga Hridaya and Ashtanga Samgraha were compiled by Vaghbata in AD 5, and many people in India still follow the ayurvedic system of medicine.

Patients with tuberculosis often experience social discrimination, stigma, rejection, and social isolation. It is not uncommon for a man to abandon his wife if she develops tuberculosis. It has been known that the family of a patient with tuberculosis is refused permission to eat in public places, attend public functions, draw water from wells, or have their children educated at public schools. But in a closely knit community in which two or three families may live under the same roof, stigma can play a key part. People are afraid of contracting the disease by living under the same roof but they usually do not agree to undergo screening.

A human skeleton

One patient was an attendant at the tuberculosis sanitorium in a small town in India. His cheerful face had attracted many people’s attention. Despite the gloomy environment he went beyond his means to make the inhabitants of the sanatorium comfortable. Three years later his body looked almost like a human skeleton. His appearance showed that something had taken toll of not just his health but also his economic situation. We were told that he was diagnosed as having tuberculosis and had lost his job. He had not taken drugs regularly, had had depression as a result of social stigma, and had ended up developing multidrug resistant tuberculosis.

It was a heart wrenching paradox: the person responsible for supporting and inspiring hundreds of patients with tuberculosis could not inspire himself to persist with the drugs and fight the ailment. No motivation seemed to give him enough hope to win over his kshayarog. You might wonder what would bring a person to such a stage, but what he said made me realise that tuberculosis is not just a disease of the lungs or organs. For this poor man it took away his livelihood; wrenched the essence of life from his mind and body; and plunged his parents, siblings, and spouse into grave social and economic difficulties. He could not afford any of the newer drugs for multidrug resistant tuberculosis. No one was willing to employ him. He said that his past sins were making him spit up blood and had accepted it as fate.

At last, however, he agreed to enrol himself for DOTS (directly observed treatment short course). He was given psychological counselling and was started on second line drugs for multidrug resistant tuberculosis, ethionamide and thiacetazone. He defeated tuberculosis and now works on paddy fields and devotes some of his time to spread awareness of tuberculosis and the associated stigma. Although the villagers refuse to accept that he is disease-free, they listen to his advice on tuberculosis and let him enter their homes. He still feels he has a long way to go because people still have misconceptions about tuberculosis and ostracise patients.

A cause for poverty

The word tuberculosis is synonymous with poverty in many parts of the world because if left untreated the disease can deprive a family of its sole breadwinner. It mainly affects the younger generation in the developing world and so inflicts morbidity on the most productive group. Also, DOTS requires trained ancillary staff and high motivation on the part of patients to ensure complete cure.

The emergence of drug resistant tuberculosis has been attributed to irrational drug use as well as non-compliance of patients with their regimens. Many patients face difficulties because of social stigma and as a result stop DOTS. The social stigma associated with tuberculosis is partly a result of the misconception of associating it with poverty, fear of contagion, and lack of knowledge about curability. Stigma often delays a person’s approach to the healthcare system, losing valuable time for complete cure of the disease. Also stigma and lack of family support prevent patients completing DOTS. So, although the drug resistant tuberculous organisms infect individuals, they affect families and communities and eventually have an impact on national and global economies.

Creating awareness among rural populations about the cause of tuberculosis, methods of prevention, and cure might reduce the ill treatment of people infected with tuberculosis. Patients cured by DOTS can be incorporated in community programmes to motivate high risk people to get screened and infected people to have treatment.

Competing interests: None declared.

Provenance and peer review: Not commissioned; externally peer reviewed.

See Editorial http://student.bmj.com/issues/08/04/editorials/138.php.

See the recent BMJ systematic review that throws doubt on the efficacy of DOTS (2008;336:484-7 doi: 10.1136/bmj.39463.640787.BE).

1. World Health Organization. Tuberculosis. 2007. www.who.int/mediacentre/factsheets/fs104/en/index.html
2. Emergence of mycobacterium tuberculosis with extensive resistance to second-line drugs, worldwide, 2000-2004. MMWR 2006;55:301-5.

   

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