Deepali (name changed on request) was 22 when she was diagnosed with drug resistant tuberculosis in 2020. She had already lost about 12 kilograms and was immediately put on a heavy dose of antibiotics, including injectables. “Tuberculosis claimed her appetite, and the medicines prescribed to her had such severe side-effects that she was unable to eat anything and was throwing up after every dose of medicine,” says her mother.
When she could not tolerate the treatment, her family consulted Dr Lalit Anande, a noted TB-specialist, who advised her to eat anything that she found tasty and was easy-to-digest. He increased her antioxidants and vitamins intake through fruits and supplements. Within a week, Deepali could digest small portions of food and retain the medicines. Dr Anande also asked Deepali to sunbathe every day, which further lifted her mood.
Deepali was cured of TB after 12 months.
Prevalence of TB in India
India has the world’s highest tuberculosis (TB) burden, with an estimated 26 lakh people contracting the disease and approximately 4 lakh people dying from the disease every year. According to the National TB Prevalence Survey 2019-2021, Delhi has the highest number of pulmonary TB cases with 534 cases per 1 lakh population. Delhi is followed by Rajasthan with 484 patients per lakh population, UP with 481 patients, Haryana with 465 and Chhattisgarh with 454 patients. Kerala has the lowest prevalence with 115 patients per 1 lakh population.
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Good nutrition and psycho-social support, says Dr Anande, go a long way in improving treatment outcomes in tuberculosis patients. A majority of TB patients stop taking medicines after a month as the side-effects are too heavy to bear and there is nobody to guide them. “What they don’t understand is that there is a high chance that leaving the treatment midway may turn their drug-sensitive TB into drug-resistant TB,” adds Dr Anande.
There are numerous studies that highlight implications of undernutrition for tuberculosis treatment and the vital role of nutritional supplementation, in treatment of undernourished tuberculosis patients.
A 2013 study in India found that a large number of TB patients — 67% males and 80% females — had moderate-to-severe undernutrition. And mortality rate among undernourished TB patients was double, when compared to those whose body weight was normal. A similar data from a Myanmar survey showed that the risk of tuberculosis in people with severe undernutrition was almost six times higher.
Psycho-social support
Experts believe that nutritional support interventions can greatly improve treatment outcomes. “The government realised the need of nutrition and social support and that is why we launched Nikshay Mitra scheme in September 2022,” says Dr Raghuram S. Rao, Assistant Director General, Central TB Division, Ministry of Health and Family Welfare “The scheme invites individuals, corporates, and NGOs to adopt TB patients and become their Nikshay Mitra for 6 months to 3 years. As Nikshay Mitra, they support their adopted patient with additional nutrition, diagnostic tests, and psycho-social support”.
Experts at National Institute of Nutrition, Hyderabad, came up with a guiding document for Nikshay Mitras that specifies what all they can include in the food basket they gift to the patient every month. “This practice not only helps undernourished TB patients get some extra nutrition but also helps mitigate social stigma attached to TB,” says Dr Rao.
Want to be a Nikshay Mitra? Click here to know more about the scheme and how to register.
Find additional information about recommended monthly food basket for TB patients
Over 10 lakh TB patients have given their consent to be adopted by Nikshay Mitra and most of them have been adopted. Meenakshi Kshatriya, a class IX student from Jabalpur, is one of the youngest Nikshay Mitras. She supports one TB patient—a nine-year old girl. “I gift a food basket to her every month from my pocket money,” says Meenakshi. “She likes eggs, peanuts, chana and rice”. Meenakshi strongly believes that if more children join the effort, it will help mitigate social stigma around tuberculosis and other diseases.
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Kushal Verma, 24, a student is recovering from TB and is supported by a Nikshay Mitra who is also a college student like him. Along with a food basket that contains eggs, soya nuggets, and some vitamin supplements, Verma also receives calls from his Nikshay Mitra every month. “I live alone in Dharamshala,” says Verma. “I have got a real friend in him, who I feel I can bank upon in case of an emergency”.
A friend in need
The entire Nikshay Mitra program is coordinated at the district level by the district’s TB officer (DTO). “As soon as we receive registration from people, or an organisation, who are willing to volunteer in the scheme, we call them and guide them,” says Dr R K Sood, DTO, Kangra, Himachal Pradesh. “In Kangra, we saw an upsurge in TB cases during COVID, when most people remained inside their homes. Besides, during snow fall, people burn wood or coal to keep the house warm which leads to poor lung health, making them vulnerable to catching the highly contagious disease.”
“Malnutrition, tobacco use, smoking, and diabetes are some of the major factors that turn a latent TB case into an active case,” adds Dr Sood. “When we talk about tuberculosis and nutrition openly, it can bring overall change in people’s attitude towards their health. We can defeat TB by improving immunity”.
Some important activities under the National TB Elimination programme are :
- State and District Specific Strategic plan for targeted interventions in high-burden areas
- Provision of free drugs and diagnostics to TB patients including for drug-resistant TB
- Active TB case-finding campaign in key vulnerable and co-morbid populations
- Integration with Ayushman Bharat – Health & Wellness Centres to decentralise screening and treatment services closer to the community.
- Ni-kshay Poshan Yojana for nutritional support to TB patients
Caregivers, Dr Anande says, are at high risk of catching the disease. Having dealt with tuberculosis for 30 years, he believes that it was his food and exercise discipline that protected him from the disease. “I have treated extremely drug resistant patients. On one occasion I gave mouth-to-mouth breathing to a collapsing patient to save his life. But I never contracted the highly contagious disease. I am very particular about what I eat and when I eat. I advise the same to my patients and their family members.”
Apart from nutrition, psycho-social support is a must for such patients. Especially since the drugs prescribed to treat can have severe side-effects.
“I suffered from blur vision, constant whistling in my ears, nausea, redness of skin during my TB treatment,” says Meera Yadav, a TB survivor and now a TB activist. “To fight these side-effects, what I needed the most was moral support”.
Interview: Dr Anand Jaiswal, Director, Pulmonology, Medanta, Gurugram
What kind of tuberculosis cases do you see these days?
Most tuberculosis cases are drug-sensitive and respond to regular TB treatment, but some show drug resistance and can be categorised into multi-drug resistant and extreme drug- resistant.
How has TB treatment changed in the last 5-6 years?
TB treatment has evolved. Earlier, patients had to consume a number of pills. Now, we have combination drugs, which are like four drugs in one tablet. These combination drugs are as effective as individual drugs. We prescribe them as per patient’s body weight.
To treat drug-resistant TB, now we have new drugs — Bedaquiline, Delamanid, Linezolid. Most patients respond well to these drugs. Injectibles have been replaced by oral drugs, making it easier for the patients.
The treatment duration is six months for drug-sensitive TB, which in some cases is extended to nine months. For drug-resistant tuberculosis, in some cases we prescribe a shorter 9-month bedaquiline treatment, in others we prescribe 18-20 months of oral bedaquiline treatment. In some cases of extra-pulmonary tuberculosis such as brain TB, Bone TB, etc, doctors may advise longer duration of treatment.
It is said that anti-TB drugs have severe side-effects. How do you manage these side-effects?
Mycobacterium is a difficult pathogen and we need strong antibiotics against it. These medicines do have severe side-effects but these are generally temporary and last till the treatment. Specific medicines have specific side-effects such as Bedaquiline, a very potent drug against MDR TB, can cause arrhythmia, or an increased heart rate; Linezolid can affect haemoglobin and blood platelet count; other drugs can impact the liver, joints, vision and cause redness of the skin.
We need to keep a check on these side-effects by doing blood tests periodically. Patients on Bedaquiline are advised ECG on a regular interval.
What role does nutrition play in the TB treatment?
A TB patient loses a lot of weight. So we advise patient to eat well, consume energy-rich food along with adequate fruits and vegetables.
What do you think of schemes such as Nikshay Mitra?
It is a good move which can help under-nourished patients receive additional nutrition. Besides schemes like this, open a discussion. When you talk about something openly, it helps mitigate misconceptions and stigma attached to it.
TB patients need moral support from families as well as community.
The treatment mix
In March 2016, the government launched new anti-TB drug, Bedaquiline, for Drug Resistant TB as part of the Revised National Tuberculosis Control Programme (RNTCP). This new class of drug is a diarylquinoline that specifically targets Mycobacterial ATP synthase, an enzyme essential for supply of energy to Mycobacterium tuberculosis.
The government inducted over 500 Cartridge Based Nucleic Acid Amplification Test (CBNAAT) machines in the programme. The CBNAAT is a rapid molecular test which detects Mycobacterium tuberculosis and rifampicin drug resistance, simultaneously. This fully automated test provides results within two hours.
In 2019, the government launched an all-oral regimen kit for multi-drug resistant Tuberculosis (TB) patients which does not include injections.