Tuberculosis (TB) Among Young People in India: Concerns and Challenges | Sonu Chauhan

In India, a significant number of individuals in the age group of 15-34 years are suffering from Tuberculosis, which adversely affects their education, employment and other life-planning events.

According to Ni-kshay Poshan Yojana’s official data, a total of 2.23 million TB patients in India were notified till November 2023. Globally, the number of TB patients was estimated to be around 10.6 million suffering from the disease in 2022. As per the National Strategic Plan, the Government of India plans to eliminate TB from the country by 2025, five years before the global target. The government’s ambitious programme of meeting the TB elimination goal is based on four pillars: “Detect, Treat, Prevent, and Build†. A recent TB report from the World Health Organization shows that India still has the highest burden of TB cases reported all over the world. Based on the patients’ interactions, this piece will analyse the experiences of young TB patients in India.

TB Centre Visit in Delhi

Recently, I visited a TB centre in Delhi, located in a slum area where mainly lower working-class people live. I talked to a 22-year-old TB patient who lives in the same locality. While talking to her, she narrated that she got infected with TB a few weeks later after finishing her last semester examination. She says, "I started feeling weakness, weight loss, sweating, and fever. I thought it could be some normal disease. When such symptoms persisted for longer, the doctor asked for a TB test, and the result was positive.†It’s been five months now to take medicines, and her health conditions have improved a lot. When asked about her struggle and experiences with the disease, she says, "I was planning to prepare for the competitive exams after finishing my graduation, but this disease came like a nightmare for me. It’s been many months since I graduated, and still, I could not do anything. During this phase of my life, I faced discrimination and isolation; even people used to go away from me for fear of getting infected with the disease. All such things are very traumatic for me. When I came to know that I am infected with TB, I had lost all my hope to the life".

An Overview of Tuberculosis

"Tuberculosis (TB) is an infectious disease that most often affects the lungs and is caused by a type of bacteria. It spreads through the air when infected people cough, sneeze or spit" (WHO, 2023). Mycobacterium tuberculosis is the bacterium mainly responsible for causing tuberculosis in humans. Specific symptoms develop in a TB-infected person, for example, fever, weight loss, chest pain, weakness, sweating at night, and coughing with blood.

Suffering and Isolation among Young TB Patients

TB patients in Indian society mainly suffer from ‘stigma and discrimination due to misconceptions’ about the transmission of disease. They face isolation, discrimination, and untouchability in their neighbourhoods, workplaces, educational institutions, etc. Most of the time, they are discriminated against and isolated by their own family members as well. Due to such horrible experiences, TB patients hesitate to reveal their disease in front of others to avoid such situations.

According to India TB Report 2023, the highest number of TB cases were identified in the age group of 25-34 years, both among males and females. When we analyze the data, we find that a significant number of TB patients are from the 15-34 years of age group. Therefore, a significant number of people in India are suffering from Tuberculosis in their most productive life. Due to illness, they suffer in terms of continuing their education, employment, and other activities. The suffering of young people through TB not only affects an individual but directly or indirectly influences other family members as well.

In India, all TB patients go through various levels of challenges in their lives due to illness. However, TB patients who are female, children and patients belonging to the LGBTQIA+ community suffer significantly due to various sociocultural and economic factors. Female TB patients who belong to the age group of 15-34 years suffer significantly due to stigmatization, the fear of dropping out of school or college, career, and other life-planning events. All such fear affects them mentally, emotionally and psychologically and makes them vulnerable. Therefore, the effect of Tuberculosis on young people varies depending on their sexual identities, region, class, availability of basic amenities, etc.

Medication Non-compliance

On the one hand, the Government of India is planning to eliminate TB by 2025, while on the other hand, presently, there are still millions of TB cases active in different parts of the country, which is higher than the expected rate. While visiting the TB Centre in Delhi, the patients mainly complained about the shortage of medicines at the TB centres. They are mainly forced to buy medicines from the market at higher prices. Due to the shortage of medicines, the continuity of TB medication courses has been disrupted, and most of the patients are leaving the treatment due to the unaffordability of TB medicines.

During conversations with the TB centre’s staff about the patients, he says, "Most of the TB patients who visit my centre are 15-30 years of age. After taking one to two months of medicines, they leave the treatment in between and start their normal activities. They do not even use masks and take other precautions. At least six months of treatment is required to cure this disease. But there are many patients who do not complete the course."

Ni-kshay Poshan Yojana

Ni-kshay is a digital platform for monitoring real-time TB patients and managing cases in India on a web-based basis. It offers various functions, including Direct Benefit Transfers (DBT) to TB patients, monitoring TB cases, managing TB patients in public and private health facilities, etc. Under the Ni-kshay Poshan Yojana, the government provides Rs. 500 monthly financial support to TB patients for nutrition. "Cumulatively, till November 2023, NTEP (National Tuberculosis Elimination Programme NTEP) has disbursed ₹2,617.44 crore to 95.93 lakh TB patients" (Ghosh, 2024).

Nutritional requirements are an essential component for TB patients to improve their health. Patients from the lower income bracket become most vulnerable in meeting their nutritional intake. The government’s initiative of providing Rs. 500 monthly financial support has been proven as relief. However, most of the patients at the TB centre feel that this amount is insufficient to buy food during the illness.

Despite the implementation of various policies and schemes, Tuberculosis (TB) is still a significant public health problem in India. The country still has the highest burden of TB cases all over the world. Patients from lower income groups, rural areas and younger age groups are most vulnerable to this disease. The societal perceptions towards TB patients have not changed yet; still, TB patients face discrimination and untouchability, stigmatization and humiliation in their everyday lives.

(Author: Sonu Chauhan is a Ph.D. Scholar at the Centre of Social Medicine and Community Health, Jawaharlal Nehru University, New Delhi)

Declaration: The author declares that verbal consent was obtained from all the participants in the study and explains to them the purpose of the interview.

Reference:

• Ghosh, Somrita (2024). “Number of TB patients in India declined marginally in 2023†. Mint.

• https://www.livemint.com/news/number-of-tb-patients-in-india-declined-marginally-in-2023-11704130762773.html.

• MoHFW (2023). “INDIA TB REPORT 2023†. Ministry of Health and Family Welfare, Government of India. https://tbcindia.gov.in/WriteReadData/l892s/5646719104TB%20AR-2023_23-%2003-2023_LRP.pdf

• WHO (2023). “Tuberculosis†. World Health Organization https://www.who.int/news-room/fact-sheets/detail/tuberculosis#:~:text=In%202022%2C%20an%20estimated%2010.6,TB%20is%20curable%20and%20preventable.