Dr Saurabh Rane was 21 when he was told to stop being a doctor and start being a patient. Reason: He had borderline XDR-TB (an extreme form of drug resistant tuberculosis). But Rane survived, and four years later, he is able to run a marathon and go on difficult treks. His story is now depicted in a short film The Long Run- A marathon to defeat TB, which also marks the launch of the campaign, ‘Survivors against TB’.
At 24, Rane’s account in the film, which was released digitally on Monday, speaks of his struggle against a disease that can be fatal if not treated properly and is aimed at inspiring those affected by TB.
“TB was not just a physical battle, but a long mental and emotional struggle too. I was partially blind, had almost lost my hearing, touch and developed thyroid disorders. And then there was depression and frustration. When I looked around for inspiration or hope, I found none. TB survivors seemed shrouded in silence. That’s why I wanted to tell my story,” said Rane.
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He was in the final months of completing his internship at DY Patil Medical College and Hospital at Nerul, Mumbai, and was a fitness enthusiast when he contracted TB. “I was shocked. My whole world fell apart. But I decided to fight this disease. While still on treatment, I took up the challenge of running the 21-km half-marathon at Powai last year. After I completed the entire two-and-a-half-year course of medicines in August, I decided to undertake a challenging trek and climbed Stok Kangri — one of the highest mountains in the Stok Range of the Himalayas in Ladakh.”
So, when I pose for pictures after each challenge, I ensure that I carry the X’Ray film that shows how my lungs were affected due to TB, Rane recalled. The film also marks the official launch of the campaign — Survivors against TB (SATB). This is a community-led movement, aimed at strengthening India’s fight against TB. The group includes Rane, along with other TB survivors, who understand and have survived TB in its severest forms. Based on their experiences, these survivors advocate with key stakeholders on the changes necessary to make TB care more accessible and patient-centric in India.
SATB recently conducted an outreach programme to the Prime Minister’s Office (PMO) and the Ministry of Health and Family Welfare, with suggestions on what needs to be done to address India’s TB crisis. “As survivors, we know the battle and we know what the patients need. There is an urgent need to incorporate survivorss perspective in TB policies in India. Hopefully, the government will listen”, says the group. The campaign has released these suggestions as a call to action.
The petition includes all the critical action points, which the survivors have developed in seven key areas. These include public awareness within communities; early and accurate diagnosis; addressing drug-resistant TB; providing nutrition and economic support; creating a robust health information system; engaging the private sector; and prioritising changes in TB treatment, said Chapal Mehra, Convenor of the campaign.