A group of tuberculosis (TB) survivors have come together to provide a comprehensive list of recommendations to the Government of India, urging it to strengthen its fight against the disease. The group called ‘Survivors against TB’ has written a letter to the Prime Minister, Minister of Health as well as the Secretary of Ministry of Health and Family Welfare emphasising the need for increased survivor engagement to strengthen and enhance policy making on key issues in TB.
Deepti Chavan, a multi-drug resistant TB (MDR TB) survivor who is part of Survivors Against TB, said, “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.”
She said their recommendations to the government focuses 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.
“The government TB programme should be patient centric, accessible and affordable. Our recommendations include creating a robust health information system for increased surveillance; engaging the private sector and prioritising changes in TB treatment,” said Chavan.
Nandita Venkatesan, who twice had extrapulmonary TB (EPTB) and survived, said in India, which has the highest burden of TB globally, awareness about EPTB remains abysmally low. “Because of EPTB treatment, I had hearing impairment. It is due to a rare side-effect of a second-line TB drug. 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,” said Venkatesen.
“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,” said 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 emphasised.