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Survivors Against TB, a group of TB survivors, has come together to provide a comprehensive list of recommendations to the government of India, urging it to strengthen its fight against TB and have provided inputs to the national strategy for fighting TB.
In a letter addressed to key officials including the Prime Minister, Minister of Health as well as the Secretary of Ministry of Health and Family Welfare, the group outlined the need for increased survivor engagement to strengthen and enhance policy making on key issues in TB. The recommendations aim to make TB care patient-centric, accessible and affordable.
The recommendations focus on the key areas such as, public awareness within communities to ensure prevention and reducing stigma; early and accurate diagnosis; addressing the crisis of drug-resistant TB; providing nutrition and economic support to the TB affected; creating a robust health information system for increased surveillance; engaging the private sector; prioritizing changes in TB treatment.
Deepti Chavan, a multi-drug resistant TB (MDR TB) survivor who is part of Survivors Against TB says, “Surviving TB in India is challenging. The stigma and the lack of psycho social support to patients and families make it extremely difficult. Women are most deeply affected with stigma especially due to our obsession with marriage. Alongside there is continuing misdiagnosis and poor treatment. Ultimately, we need to ensure that every Indian has access to accurate diagnosis and appropriate treatment whether they seek care in the public or private sectors.”
Nandita Venkatesan, a two-time extra-pulmonary TB (EPTB) survivor who suffered hearing impairment due to a rare side-effect of a second-line TB drug, said, “In India, which has the highest burden of TB globally, awareness about EPTB remains abysmally low. EPTB is difficult to diagnose and there exists confusion about the appropriate treatment channel for it. I, like millions of TB affected, suffered from lack of information and depression, due to the stigma, which makes the recovery from TB arduous.” TB treatment is toxic and has severe side effects. She highlights the need for TB drugs that are less toxic than the existing treatments.
“There exists a dire need to provide nutritional and economic support to TB patients. Patients need nutrition but many can’t afford it as they lose employment due to the side effects. Hence, economic and nutritional support is critical when it comes to adherence and recovery,” says Saurabh Rane, another MDR-TB survivor. “Patients also need early diagnosis, mandatory drug susceptibility testing (DST), and access to new drugs. These can reduce MDR transmission significantly,” he stresses.
The group believes that government action on the recommended areas will not only enhance TB control but also assist in reaching its commitment of Universal Access. These suggestions are based on the group’s experiences of surviving TB and working with numerous TB affected individuals who have reached out to the group for support.
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