Thriving through tuberculosis

On World Tuberculosis Day, TB survivors and  healthcare professionals talk about living with the disease, and the effect of the pandemic on everything from diagnosis to recovery
For representational purposes
For representational purposes

CHENNAI: With the COVID-19 crisis taking up much of global attention since it descended upon us early last year, an estimated 1.4 million fewer people received care for tuberculosis (TB) in 2020 when compared to 2019, informed a report compiled by the World Health Organization last October. The gap between the number of people officially diagnosed with the disease and the estimated number of people developing TB every year, pegged at 3 million across the world, was also made worse. In India, TB notifications fell by 25 per cent in the January-June period of 2020. One year down the line, as the country’s healthcare unit slowly returns to relative normalcy in these avenues, there’s still much left to catch up with it seems. 

Dr Ramya Ananthakrishnan, director of REACH an NGO that is working creating a TB-free country, suggests that the tide has turned for the better. “When COVID impacted TB one year back, it affected healthcare seeking. People could not come for testing. The similarity of symptoms of COVID and TB also led to fear, hesitancy and stigma coming in for TB testing. Then, those with extrapulomonary TB delayed seeking care. Besides, with the private sector generally dealing with emergencies, there was a delay in addressing people who primarily went to these hospitals.

Because of these factors, there was a huge decline in the number of patients identified and started on treatments. There was a huge dip in the notifications in the private sector and some in the public sector also. Compared to this, things have started improving notification has picked up, people are coming in to get tested, diagnostic facilities have opened up. What remains to be seen is whether we are able to catch up on those people whom we were not able to diagnose last year, in addition to what is expected in the current year,” she explains. 

Prioritising early intervention
While the healthcare providers are busy trying to bridge the gap, it hasn’t particularly been smooth sailing, it seems. With many of TB symptoms mirroring that of COVID-19, patients often misdiagnose themselves with the latter and fail to get adequate treatment on time. “TB isn’t going to come within a week or so; it’s a long process, takes months to develop and people have symptoms. Many of the patients who have cough for a long time (one of the most common TB symptoms), they thought it was COVID and they self quarantine, self medicate and stay home.

ILLUSTRATION : tapas ranjan
ILLUSTRATION : tapas ranjan

They will be alright for a certain period of time. This way, a lot of TB cases that could have been picked up earlier were diagnosed late. They would come after six months or even a year,” details Dr Anantha Subramanian, pulmonologist, Kauvery Hospital. People who mistake TB for coronavirus may also inadvertently end up spreading the disease, he suggests. “They would quarantine themselves for a period of time and then start to mingle among others. If it’s an open, active TB, they would be spreading it to others as well,” he explains. Amid all these concerns, the primary focus is on early diagnosis. Common symptoms that people can look out for are cough that persists beyond two weeks, unintentional loss of weight, loss of appetite, low-grade fever that persists beyond ten days, he says.

Need for compliance
While treatment for TB may vary depending on which part of the body it manifests in and the severity, any treatment runs the course of six months at least. If diagnosed early and if the medication schedule is diligently adhered to, there are more chances of ensuring that it doesn’t turn into multidrug-resistant TB (MDR TB). Valarmathi in Vellore lost her husband to the disease when he took a hit on both these key fronts. It was in 2015, when he was 34 years old, that he was diagnosed with TB. But, with little awareness of the affliction and much less of the medication regimen, he had not stuck to the routine. It soon turned into MDR TB and he died of it last year. In the meantime, Valarmathi and her then eight-year-old son, too, contracted the disease.

Having seen the way her husband had suffered, they were better prepared to handle their treatment, she narrates. “As far as primary TB is concerned (first occurrence that is drug-resistant), people will get treated for six months and they will become alright. They have to stick to their medicine, take it without fail every day. There are so many side effects to the medicines. So, if they develop nausea or such, they would immediately stop the medication. Then, the disease worsens. It won’t happen immediately but over time, they will have a florid development of the disease and it will spread to the rest of the body; it cannot be managed at that point of time. That happens with certain patients,” he explains, adding that there are several NGOs such as REACH who monitor TB patients and help them adhere to the treatment schedule.

REACH goes one step further and engages TB survivors to take the awareness and compliance programme forward. “We are working with people who have been cured of TB. We’ve trained them to become TB Champions so that they understand the disease very well and are able to educate other people with TB and counsel them, using their own experience to motivate the other to successfully complete the treatment,” says Dr Ramya. 

Valarmathi is one such Champion. “It was a social worker who told us about this work. It was only we attended the three-day training (by REACH) that we understood the details of the disease. Had we known as much earlier, we would have taken better care of my husband. So, we wanted to inform other people. Besides active case finding, we’ve counselled thousands of people over the phone and even in direct visits,” she narrates. And it comes with plenty of positive results, it seems.

“People call to tell me that their husband treats them better after we counselled them. If some elderly people don’t get the government aid (under the Nikshay Poshan Yojana), we go about the works and get it for them. These are people whose children and grandchildren don’t want to care for them properly. When these people tell us that we’ve helped them, we’ve been useful to them in some way, it does make me happy. It makes me want to do more and more,” she shares. Twenty-two-year-old Srimurugan, in Coimbatore, has been dispelling the notion among fellow patients that TB cannot be cured. Over the past year, he has helped over 40 families accept the disease in their loved ones and stick to the medication.

Striving against stigma
This programme, besides it’s obvious benefits, also works towards slowly removing the stigma associated with the disease, suggests Ramya. “This (project) has a huge impact on not only enabling the other patient to complete treatment but also helps to destigmatise the disease. And the very fact that we started associating the word ‘Champion’ with the TB survivors has motivated a lot of them to share their stories and use it to influence other patients and their neighbourhood and communities. The way forward would be to amplify this; that is the only way to remove stigma,” she shares. 

Srimurugan could not bring himself to tell his parents about the diagnosis; his doctor had to do it for him. Now, after having worked with REACH, he is able to advocate for people living with the disease, get his friends to see past the label and stereotypes. “People tend to ostracise those diagnosed with TB, thinking it’s AIDS. We try to counsel them against it, trying to make sure that TB survivors don’t face such treatment in the house,” he says. He wants to do his part to spread more awareness and contribute towards preventing more TB deaths. 

But, for the country to reach its target of ending TB by 2025, it’s important that all pieces come together, says Ramya. “Two key players whose participation is very critical is the private sector and the affected communities. These players and the programme (like REACH’s) have to synergise and only then it’s possible to reach the target,” she concludes. 

A policy that cares for the needy 
Under the Nikshay Poshan Yojana, all people with TB are provided with a cash benefit of Rs 500 every month, to help them meet the financial and nutritional burden through the course of treatment. However, this does little to sustain the patient when they are faced with negligence and loss or limitation of liveliihood and general stigma, says Valarmathi. “This amount can be increased to Rs 1,000 or more. Many people we meet don’t get food from the family.

There have been times when we handed over our food for them during house visits. We might be able to give them Rs 50 for that day but it would be so much better if they could that kind of money on a regular basis,” she suggests. If some elderly people don’t get the government aid, they go about the works and get it for them. “These are people whose children and grandchildren don’t want to care for them properly. When these people tell us that we’ve helped them, we’ve been useful to them in some way, it does make me happy. It makes me want to do more and more,” she shares. 

Related Stories

No stories found.

The New Indian Express