Sajjan Chaurasia, a resident of Jahangir Puri and a paanseller by profession, considered himself lucky when his affliction of Tuberculosis was detected at an early stage. He was put on treatment and his health recovered. He resumed his work and all appeared well.

That was until news came that he was no more. Apparently, Chaurasia, a father of a two-year-old, felt he had recovered and had stopped taking medicines. “If he hadn’t stopped taking medicines, he would have survived,” quipped a doctor.

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Tuberculosis, better known in its short-form, TB, is one of the oldest diseases in world and has a reputation of having killed millions of people so far. It also falls among the diseases whose treatment was discovered long ago. Sadly, it hasn’t been eliminated as yet and every year it has been taking a good number of lives around the world. The condition in developing countries is even worse. India has the highest number of cases, with 28 lakh people still suffering from TB, and 4.25 lakh deaths reported in 2016.

Post-Independence, India has been actively trying to control the situation, but failed to stop the death toll. A National TB Control Programme is already in place. This year, Prime Minister Narendra Modi launched a TB Eradication campaign, which is targetted to eliminate TB by 2025, five years ahead of the global deadline.

“Given the way TB affects people’s lives, health of the society and impacts the country’s economy and future, it is very essential to get rid of TB within the stipulated time,” said Modi while inaugurating the Delhi End TB Summit. As per WHO reports, India still accounts for one fourth of the TB patients worldwide, with many succumbing to the disease. And so, the big question: Why are so many people dying every year even after availability of treatment and so many initiatives by government?

Experts cite several reasons for it. The most common is the duration of the treatment ~ it is very long and exhaustive. For any general TB patient, it takes at least six months’ medication. And if the patient is suffering from MDR TB (multiple drug resistance) it takes around nine months (as per new regimen).

The trouble is, most patients belong to the lower strata of society; they can’t lay off work for six months at a stretch. And many a time, they end up quitting the medicines, which makes their case worse as the disease becomes immune to the drugs.

Other than this, lack of proper knowledge, secrecy due to social taboo and lack of organised care, follow up and reporting system increases the mortality rate.

What is TB?

The first thing one should know about this disease is that it is communicable. Its main cause is a specific bacterium that evolves inside the body. This bacterium spreads throughout the body when a person has active TB infection. The major cause of acquiring TB is living a life with a weak immune system. Therefore, one notices the outbreak of this disease in people low on nutrition, including those living in slums, the old and kids.

The air-borne contagion spreads very fast if someone who has the TB bacteria in their body sneezes, coughs, sings or talks. Droplets containing the bacteria are released in the air and can infect a person inhaling it. Therefore, doctors advise patients to use mask, maintain personal hygiene, not to spit in open and keep the house ventilated as methods of infection control practice.

“Not only this, the bacteria that cause TB can stay alive in the air for a few hours, especially in small places with no fresh air and sunlight. One can find the maximum number of tuberculosis cases in the slum areas or congested locality,” said a doctor from Delhi.

Another form of the disease is Muti Drug Resistant TB, where chances of death is maximum. It takes at least nine months, with more toxic and much more expensive medicines for its treatment.

According to a survey by WHO more than six per cent of all TB patients in India are MDR-TB. Based on the data in the WHO’s Global Tuberculosis Report 2017, an estimated 1.47 lakh people have MDR-TB in India, accounting for a fourth of the global burden. Out of them, 30,000 patients need immediate access to better drugs and diagnostic facilities. Sadly 20 per cent succumb to the disease.

Peep into history

Tuberculosis is one of the most ancient diseases known to mankind, with molecular evidence going back to over 17,000 years. In India, TB problem was first recognised through a resolution passed in the All India Sanitary Conference, held at Madras (now Chennai) in 1912. Then, the Bhore Committee Report, issued in 1946, estimated that about 2.5 million patients required treatment in the country with only 6,000 beds available. However, the first open air institution for isolation and treatment of TB patients was started in 1906 in Tilaunia near Ajmer and Almora in the Himalayas in 1908.

The anti-TB movement in the country gained momentum when the TB Association of India was established in 1939. In 1962, National Tuberculosis Control Programme (NTCP) was formulated, which was implemented in a phased manner. The deficiency in NTCP was identified and in 1993 Revised National TB Control Programme (RNTCP) was developed and was piloted among a population of 2.4 million in the states of Delhi, Gujarat, Kerala, Maharashtra and West Bengal.

This was later expanded to cover 13 million people by 1995, and 20 million by 1996. It introduced DOTS (the internationally-recommended strategy for TB control) which promotes diagnosis by sputum smear microscopy, direct observation of treatment, standardized regimens, recording and reporting of notified cases and treatment outcomes, and political commitment. This year, Union government vowed to eliminate the disease by 2025.

Financial burden

While the government, doctors, and global bodies such as the WHO have joined hands to eradicate Tuberculosis from India, patients have a different set of woes to share. The disease not only takes a toll on them physically and mentally but financially also. As already stated, this disease is majorly associated with the lower strata of society. Therefore, for these patients to rest at home is not possible. Take for example, Ranjit Kumar, who lives in Azadpur, Lalbagh, in North Delhi. He was working in a factory and running his home very well.

Three months ago, he developed symptoms of TB. When the disease was confirmed, he had to leave work and take rest. Now he is too weak to go out to work and is unable to run his home. “For the first few months, we borrowed money from our relatives and friends. How long can we ask money from them. If my husband can’t do anything I will have to do some work,” said his wife, who had come to get the medicines in Babu Jagjivan Ram Hospital in Jahangir Puri.

Then there was another patient, Jyoti, who developed MDR TB. Her mother says she didn’t have any knowledge about the disease when she developed the symptoms. Now she is very weak and has lost weight. “Because of her my whole household is now disturbed. My husband, who is the only earning person, has to take care of her and many a time he has to miss his work. It creates a big financial problem for us. It is getting difficult to even pay rent this month,” complained Jyoti’s mother.

There are many patients, who are financially crippled once they contract TB. Not only the patients, the disease affects the whole family. While the government does provide treatment free of cost, there is no social security to keep them financially secure during the period of treatment. Therefore, many of them are left with no choice but to go out to work as soon as they feel a little better.

Recently, government introduced a scheme, under which the patients are given Rs 500 per month as nutrition support during their treatment. But is this enough to run houses of people like Ranjit?

A silver lining is provided by private players, including NGOs, helping them to recuperate not only the disease but also financial health. GLRA, a Germany-based NGO, is working in this area for TB patients in India. They provide support to RNTCP schemes with home- based care and support, TB screening of vulnerable population and other interventions. They give immediate care to MDR-TB patients at their home through counseling. “Needy patients and their families are supported through socio-economic programmes and vocational training to promote income-generation. Patients who have low Body Mass Index are provided monthly nutrition,” informed the spokesperson from GLRA.

Why is it not controlled?

Dr Kamal Chopra, the director of New Delhi TB Centre, cited various reasons that government as well as doctors are not able to control TB deaths. India has the largest share of this disease; the first and foremost challenge for the government is to decrease the load of this disease very fast. For this, they are trying to enhance the immunity level of people and try to observe those with low immunity level. Because these people are the among those who are the most prone to contracting TB.

“People, like HIV-infected or patients, who are taking steroids, are keept under proper observation. Meanwhile, projects like Swatch Bharat and Nutrition Programme are helping us to enhance immunity level,” informed Dr Chopra.

Early detection and early diagnosis can provide a major boost to eradication of Tuberculosis. If it gets detected early, diagnosis becomes easier. For this, government has started looking at patients or vulnerable people. Earlier, it was the patients who used to come to the hospital but now the health workers themselves visit the vulnerable people at their homes. They keep track of them until they are treated.

“Under the new policy, we look for patients. We go to places where people who are vulnerable to the disease live, meet truckers, construction workers, asthma patients and others. We explain to them about the fatality of the disease,” said Dr Chopra.

Not only this, the new medicines and new technology have also made their work easier. Earlier, for general TB, one has to take medicines for a year or two and if one was suffering from MDR, he had to take medicines for three years. Now with the new medicines, the treatment period has drastically decreased to six months and nine months respectively.

There has also been an improvement in detection technology. Introduction of CBNAAT (Cartridge-based Nucleic Acid Amplification Test) has eased the doctors’ work. “First we started with X-ray, in which chances (of detection) were very less. Then there was sputum test, which was time consuming. But now with this CBNAAT, TB can be detected without any failure and in two hours’ time,” said the doctor.

The other strategy changed was in tracking of the patients. Earlier, if patients stopped visiting doctors, they were sent a letter only but now they are fully tracked. However, the most main problem is the private sector. There are many patients who opt for private hospitals or doctors for treatment.

However, this created a lot of problem for them. Unlike government hospitals, the private practitioners don’t keep record of the patient or track them. At the same time, when a patient, whether in rural or urban area, opts for unqualified doctors one hardly know the certified treatments. Even if the doctors are qualified, they stop sharing details of patients. This adds to the woes. However, in 2012 government made it mandatory for notification of patients, and this year, declaring it a criminal act if they fail to do so.

While the government is taking several good initiatives, their target to eliminate TB by 2025 seems to be a herculean task.