Chennai: Despite Tamil Nadu being a medical capital and is aware of serious killer diseases such as cancer, tumor, cardiac issues and diabetes, 45 lakh people in Tamil Nadu suffer from rare diseases, data from the Organisation for Rare Diseases in India (ORDI).
Madras Motor Neuron Disease, Acromegaly, Parkinson’s disease and Grave’s disease are some of the rare diseases that people and even the fresh medical graduates are unaware of.
For instance, 15-year-old Lakshmi often complained of weakness in legs and poor visibility. Her parents took her to an eye specialist in Chennai, but treatment was not useful.
She started losing weight and became progressively weak. After two years of treatment, she was diagnosed with Madras Motor Neuron Disease. Her parents were unaware of any such ailment as it was one of the rare diseases in Chennai. Though Lakshmi underwent many treatments, she passed away at the age of 19. It is not just Lakshmi, but 8 crore people in India who suffer from rare diseases.
The statistics call for an urgent need of a national policy for the treatment of rare diseases in India and to emphasise the same, ministry of health and family welfare recently recommended the applicability of National Policy for treatment of rare diseases in all states.
Though Tamil Nadu stands sixth among all the other states in the country in case of number of rare disease patients, state health department has neither derived a proposal to formulate a policy for the treatment of rare diseases, nor are these diseases covered under the Tamil Nadu Comprehensive Health Insurance Scheme (TNCHIS).
Mentioning the lack of epidemiological data to derive on a uniform policy, State Health Secretary J. Radhakrishnan said, “We cannot define rare diseases due to lack of uniformity. Rare diseases affect only a small population and therefore, it is difficult to ascertain the number of rare disease patients or to provide a policy for the same. If Union government lays down a policy, state will follow regulations as per the policy.”
Medicos have highlighted various challenges associated with rare diseases that need to be addressed.
“Uncommon diseases widely vary as per prevalence. The small numbers and lack of research does not provide much scope to researchers, worsening the situation of rare disease patients. The biggest challenge with rare diseases is that they have mimicking symptoms of other diseases and thus, take years to get diagnosed,” said Dr G.R. Ravindranath, convener, Doctors’ Association for Social Equality.
