Updated: Sep 9, 2020
by Abhijith. N. P
Earlier in the month of March, during one of our routine field visits in, we met Ramnath (name changed), who is currently undergoing treatment for Multi-drug resistant TB (MDR TB). Ramnath works as a daily wage labourer in a nearby farm. Although he was advised complete rest until his treatment completion, he had to start working to feed his family of eleven. When we met him, he worriedly informed us that he was not called for work since the past few days. On further probing he also shared that he noticed his neighbours' changed behaviour towards him.
Ramnath was being treated for MDR TB since the past three months. He was diagnosed in December 2019 after he fell sick with fever, cough and fatigue. There was improvement in his health due to the medication but the cough still persisted. This is when we realised that Ramnath was being stigmatized not only because of the disease he was suffering from but also due to the new disease which has rattled the entire world, the COVID-19.
Picture: A field coordinator from IIH providing counselling on 99 DOTS
All tuberculosis patients face stigma irrespective of their class, status and gender. Stigma is moulded and propagated by institutional norms and social insolence.
As Ramnath was being isolated, it not only affected his financial well being but also his mental health. He was even scared to visit the hospital in case of any emergency. TB patients are immunocompromised, vulnerable and are devoid of access to quality healthcare. Since, the symptoms of TB and COVID-19 are similar as both the diseases are related to respiratory conditions, the burden of stigma on these patients doubles. This discernment results in a traumatic experience for people like Ramnath who face a type of apartheid which directly affects their day to day life and strips their livelihood opportunities too. Pulling people like them out of the vicious dual burden of stigmatisation and deprivation then becomes a herculean task for both civil society and governments. This exacerbating societal positioning of TB patients further alienates them from the Public Health System. Issues such as shutting down of Out-Patient care Division (OPD), lack of transport to the government facility and others make it difficult for patients to seek immediate and urgent care. Also, doctors in private care are shutting their clinics hence risking lives of such patients in case of emergencies. Post lockdown, the concerns of TB patients will continue. They might not only face stigma in their community but also in the healthcare facilities.
Awareness drives and strict protocols need to be followed to ensure that presumptive TB patients do not face difficulty during diagnosis and treatment. This will not only increase the burden of TB, a disease which has a high mortality rate but also leave a long-lasting impact on the mental health of those affected by the disease.
Looking at the gravity of the situation, it is vital to understand the importance of reaching out to the vulnerable group of population to avoid any health issue due to comorbidity. Currently, our organisation Innovators In Health is on a war footing mode towards creating awareness and following up with our TB patients through telephonic counselling and follow-ups. The organisation has also begun telephonic screening, where our staff are screening people from the community with the help of a symptom-based screening tool. The stigma is quite visible, as it is affecting our telephonic screening process where presumptive TB cases are hiding their symptoms due to the fear of being labelled as a suspected COVID-19 case. To build trust in the community, the right information needs to be shared which can help people differentiate between the two diseases on one hand and also address stigma on the other.
A block coordinator from IIH during one of the field visits
During pandemics, it is essential to reach out to those who are left out, create awareness and facilitate their easy access to the public health system. With our dedicated efforts at IIH to curb the double burden on our patients, we hope to bring about some changes on the ground. Since, hope was the only positive that Ramnath’s eyes reflected after our last interaction with him.
About Innovators In Health:
Since 2010, Innovators In Health (India) “IIH” has been providing care to people with Tuberculosis through a community-based program built on the scaffolding of the public health system in Samastipur, Bihar. Currently this program serves 3.2 million population across 12 blocks of Samastipur with 111 full time and 41 part-time team members. Since its inception, we have screened more than 90 thousand presumptive TB patients in the community based on the referrals received from ASHA and other stakeholders. Around one third of the referrals were screened positive, and went through TB diagnosis, and out of them close to 10,000 were TB positive and put on TB treatment, all through the public health system. The access to TB care has doubled in our catchment area.
Mr. Abhijith is Project Manager at Innovators in Health, Bihar (Samastipur). The views expressed in the article are personal to the author.