While I am trying to provide as much support to father to fight his cancer, every-time I visit his CCC I find it very disheartening to see others suffering with Oral Cancer. I have been very lucky to have found OCF and such a wonderful members but it may not be the case with everyone here in India.
As per a study conducted by National Institute of Public Health (India), India accounts for 86% of the world's oral cancer cases and surprisingly 90% of these cases are due to chewing tobacco (my dad also happens to be one). India mostly sees incidences of cheek cancer due to excessive use of tobacco in chewable form - pan masala and gutka. In US, oral cavity cancer probably represents only about 3% of malignancies, India sees over 30% of all cancers and unfortunately there are not enough awareness drives and screening programs from the Government and the Private CCCs. There have been numerous anti-smoking campaigns but nothing about ill-effects of chewing. Incidentally tobacco in chewable form are sold in attractive packages and do not cost much thus encouraging people to buy them instead cigarettes. Typically, oral cancer incidence is prevalent among the middle and lower income group and has been affecting rural population as well.
Ignorance and denial further compounds the problem and by the time these people arrive at hospital, they are already in advanced stage and are mostly put into palliative care. In fact, in India, 60-80% of patients present with advanced disease as compared to 40% in developed countries. Lower literacy rates (in most cases) and lack of awareness among affected people (Patient and Caregiver) makes is difficult for doctors to convey the actual course of treatment and prognosis. The treatment is most reactive in response to specific condition and they only share relevant information that would not cause panic or distress. In-fact, most of the affected patient and their care-givers do not know what to ask. My personal experience also hasn�t been much different even though we had sufficient awareness about the disease and treatment. Doctors have just become little comfortable with us and have started sharing information.
Most of the reputed CCCs in India are overly crowded and Government facilities are very less. India also sees patient from other nearby countries so there is severe crunch of good cancer facility. India does not have publicly funded healthcare system like west and people end-up spending their lifetime savings and assets to get the treatment. Only lucky few are covered under some insurance scheme to reimburse part of the expense. I feel that awareness drives and oral cancer screening programs would help reducing strain from Indian Healthcare system and would help lowering mortality of the disease. Probably there may be few institutions already doing it.
I want to make a difference by spreading awareness but I do not know how to connect. Internet does not have a very good penetration in India and specially the community that I am trying to connect to. The first phase would probably be CCCs in and around Delhi NCR. I need your guidance and help to make it possible.
