How oral cancer survivors are helping India kick its gutkha habit

25-year-old Amit Baliyan wanted to die. Every time he tried drinking water, he felt the pain of thousands of needles in his mouth. His tongue had turned into a white patch, covered with numerous red blisters, big and small. He could not bear to look in the mirror because the right half of his face had become hollow. Despite his athletic body he had lost 26 kilograms in two months, could not move his neck and couldn’t sleep due to the pain. More than a year after surviving the chemotherapy sessions, Baliyan recounted his ordeal before a gathering of bureaucrats, legislators and doctors in the national capital. With a muffler covering his neck and part of his face, he told them why the government should enforce ban on tobacco products, something he was once addicted to and gave him oral cancer, cutting short his dream of becoming a cricket coach. “I don’t blame the government for my situation. Only I am to be blamed. But I am sure if tobacco products are not readily available, people will be deterred from consuming them,” he said. [caption id=“attachment_522799” align=“alignleft” width=“380”] Cancer survivor Amit Baliyan. Naresh Sharma/ Firstpost[/caption] Baliyan is a campaigner with the Voice of Tobacco Victims (VOTV), an initiative by oncologists and oral cancer patients that has been making an emotional but effective pitch to policy makers for effective implementation of policy against tobacco products. According to the Global Adult Tobacco Survey India, 2010, more than one-third of adults in India use tobacco in some form or the other. Five per cent of them consume smoke as well as use smokeless tobacco. Smokeless tobacco use in India is among the highest in the world and more Indians use smokeless tobacco than  cigarettes and bidis combined. According to the recent WHO Global Report , Mortality Attributable to Tobacco, almost two in five deaths among adults aged 30 years and above in India are caused due to smokeless tobacco. India is perhaps the capital of oral cancer patients of the world with 75, 000 to 80, 000 new cases of oral cancers being detected every year. Dr Pankaj Chaturvedi, an oncologist with Tata Memorial Hospital, Mumbai for ten years, attends to around 200 oral cancer patients daily. In 2008, he asked some of his more eloquent patients if they would become the faces of an anti-tobacco campaign. In May of the same year, ten such patients made an appeal, ‘This is what tobacco did to us. We want to save others.’ Currently, VOTV has 47 oncologists (called ‘patrons’) and 500 plus oral cancer patients on the panel. “They don’t use any data. It is plain speak from those who have lived the ill effects of tobacco,” said Dr Chaturvedi. In 2011, directors (oncologists) of 17 regional cancer centers wrote to the prime minister and health minister to ban gutka and pan masala in India. Same year, VOTV made 11 chief ministers, a deputy chief minister and three state governors sign pledges saying that they would curb the use of tobacco products in their states. Since the union ministry of health and family welfare notified Food Safety and Standards (Prohibition and Restrictions on Sales) Regulations, 2011, banning tobacco products in food items, VOTV has been lobbying with policy makers for implementation of the ban. It started with Madhya Pradesh, the state which reported 35,000 cases of oral cancer cases, eight times the world average. In April 2012, Madhya Pradesh became the first state to implement the ban. Kerala and Maharashtra were the next two states approached by the VOTV. So far, 15 states have banned sale, manufacturing, storage and distribution of products like gutka, khaini, pan masala, mandated by the Food Safety and Standards (Prohibition and Restrictions on Sales) Regulations, 2011. But the players in tobacco industry, which makes a profit of more than ten thousand crore per annum, would not budge easily. Many tobacco companies reportedly held talks with the government to remove the ban. In September 2012, Central Arecanut and Cocoa Marketing and Processing Co-operation Ltd (CAMPCO), Smokeless Tobacco Association and the All India Kattha Factories Association, ran a series of advertisements in national dailies suggesting that ban was unfair as chewing tobacco was less hazadarous than cigarettes. Keshav Desiraju, special secretary, union ministry of health and family welfare, said that all the tactics followed by the industry can be handled if there is a public movement against the use of tobacco products. “A dialogue with the industry is much more effective when it involves oral cancer patients. It is much different from the scenario when government officials talk to them,” he said. Dr Chaturvedi admits that the tobacco industry would not settle easily with the ban. But he is confident that when his patients narrate their stories, the industry does not stand a chance. “Cancer is a taboo in India. The day a person is diagnosed with cancer, he dies every day. But here, we have warriors in cancer patients,” he said.