Sikkim won best-performing state in TB reduction. But what is the reality?

Gangtok: On March 24, 2022, Sikkim won the title of the best-performing state (less than 50 lakh population category) and the Bronze medal for a 20% reduction in TB incidence. This award becomes even more exemplary since the global pandemic was at the centre of public health. 

Since 2015, states that reduce TB cases by 20 per cent get a bronze medal, states that reduce TB cases by 40 per cent get a silver, states that reduce TB by 60 per cent get a gold medal, and states that hit the 80 per cent mark get a ‘TB free’ status. Sikkim, for example, aims to be TB free by 2025. 

State TB officer Dr Ashok Rai, who received the award, said Sikkim deserved the recognition. “The National Institute for Research in Tuberculosis, which comes under the ICMR, after their survey a month ago, certified Sikkim as Best Performing State,” he told EastMojo. 

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“We provided data through the Nishchay Poshan Yojana portal. We had 1350 TB incidences, which has seen a 20 per cent reduction. The most affected among the six districts is Gangtok owing to the population. There are currently five district TB centres, with East (Sikkim) getting two: one in Singtam and the other in Gangtok. Now, with the two new districts, Pakyong and Soreng will get two new TB centres,” he added. 

However, everyone wasn’t convinced that Sikkim received the award due to its diligence in combating this public health crisis. Health activist and TB survivor Prashant Sharma said the award is a little dubious. In a conversation with EastMojo, Sharma says, “The deadline for TB-free states or districts keeps changing. If the previous government used to say 2022, the current government has pushed the deadline to 2025. Moreover, the data with which the government claims to be the ‘best-performing state’ is far from reality. These numbers are merely data shared by the state government with the central government. Are they involving TB patients and families in communities while ascertaining the data? The government tends to show treatment completion for patients before the completion or if the patient goes missing from treatment as well. There is no redressal mechanism where a patient or a family can complain. There is no contact testing for MDR or TB patients. These reports are not monitored or advised with suggestions, anything, that the government sends is the data.”

What happened to the stimulus fund? No one knows

Both the health activists and the TB patients pointed out that Sikkim used to give Rs 2,500 per month as an incentive to TB patients to help them ease financial concerns during the treatment period. But Sharma, a TB survivor, spoke of how government incentives for TB patients were reduced from Rs 2,500 to Rs 500 currently. He shared, “If a family’s breadwinner is undergoing treatment, the family’s economy gets hampered and their nutrition requirements are not met. Earlier, these patients used to get Rs 2500 per month. But now they are getting Rs 500 as the government has claimed there are no funds. Many patients are unable to meet their nutrition requirements. Most patients give up on treatment after it hampers their income and become more susceptible to the spread. There is a clear lack of support from the government.”

Dr Rai said the stimulus was not sustainable. “We do not know if the same was used for the COVID fund. It was made available from April 2018 to March 2019. Following this, the government issued a notification that asserts that the funding no longer exists. The Rs 500 incentive is under the State Poshan Yojana, it is given to those with Aadhar Card and bank details. In the Rs 2500 incentive, the requirement was a Certificate of Identification. This is given only until treatment, the duration is different, varying from 3 months to even 18 to 20 months,” said Dr Rai. 

The State TB Officer further added, “The fund was given when the patient is registered. and the first two months of incentives are given directly. It gets directly transferred as a benefit. After that, for Rs 500 per month, we have a follow-up system. We call the patients, then ASHA workers, mid-level health workers, TB staff and volunteers, doctors or District TB officers and even counsellors follow up on the patients.”

Another health official, who chose to remain anonymous, said the Rs 2500 incentive proved to be a logistical issue. “The Rs 2500 TB incentive was predesigned for Sikkimese people with Certificate of Identification (COI) being a necessity. It filtered people getting TB treatment as those belonging to Sikkim. But now, with the nationwide Rs. 500 incentive (due to COVID), the demarcation of patients is certified by Aadhar, meaning any person residing in India can avail that facility.” 

“The previous government carried out the scheme ideally as a political scheme just before the 2019 elections. and the Rs 500 incentive is sustainable since it comes from the Central government. Rs. 2500 incentive was widely misused to buy other things through that medicine incentive which was a waste of public money. We must not forget, there are ancillary medicines given through the Central Medical Store by the State government. Even the Jan Kalyan Prakostha scheme of the SKM government is giving such incentives, including travel costs for the patients,” the official added. 

The bottom line, however, is that the stimulus, whether Rs 2500 or Rs 500, was erratic. 

A TB patient currently undergoing treatment in Pakyong, Sikkim, told EastMojo, “We have been getting Rs. 500 (per month). But it has been erratic, wherein sometimes, we get it bulk for 5 months while for the rest of the months there are no incentives. I received the last payment in June 2021, after that, I have not received it. I never received the Rs. 2500 incentive, probably because I (became) a patient after the incentive was closed. I have been an XDR patient since 2020. There is a lot of social stigma towards us, but at least we have been getting medicine often.”

Need to do a lot more to combat TB in Sikkim 

While the Sikkim government claims to be doing an admirable job at controlling TB, it is clear that the state needs to do a lot more to understand the prevalence of such a disease in Sikkim. Dr Rai admitted, “There is no research or data from the ICMR on why Sikkim has a high number of TB cases. There was genome sequencing carried out a few years ago when the Beijing variant was detected, there was a specific strain found in Sikkim, which is still under research.”

“The concern is not of the variants. But there are a lot of suicides among TB patients in Sikkim, more than in some other states in the category of 50 lakh and below population. This needs to be studied,” he added. 

Activist Sharma says that there is also a lack of state-level or district-level steering committees for TB management. “Committee planning or involvement of families struggling with TB has not been carried out. The committee must include families of TB patients because they will be able to address the core issues of living with TB,” he added. 

Sharma also compared how incurable diseases like AIDS have been managed in the state while comparing with curable TB. “The advertisements and campaigns of the government speak about how TB is curable. When it is curable, why are more people dying of TB than AIDS in Sikkim? Perhaps, it is because AIDS societies in the state have been able to identify the cluster that is more susceptible to HIV and AIDS, be it sex workers, drug users or any other. In terms of TB, that sort of cluster treatment and awareness has not happened,” he added. 

One reason, Sharma said, why TB cases continue to rise, is because of a shortage of TB medicines and treatment for TB patients. “There is TB preventive therapy, which depends on medicines or a combination of them. So, we have placed the demand for 3HP medicines, which have a dosage of once every week for three months. During the lockdown there were medicine shortages…some are faced with the grim reality of patients themselves travelling for medicines. The same cannot get covered by the Rs 500 incentive given to the patient, it can’t cover their medicine or nutrition needs. If the patient travels he must be reimbursed.”