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Telangana Sits on Rare Disease Policy, Patients Suffer

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Thursday, July 12, 2018
HYDERABAD, India - Telangana medical and health department is sitting on a rare disease policy and is yet to allocate its share for the treatment of rare disorders. According to the rare disease policy issued by the Union government, the Centre has allocated Rs 100 crore towards its 60% share and Telangana is yet to give its 40% share.

As rare diseases are not included in either state-sponsored insurance scheme, Arogyasri, or any private health insurance, it has become a financial burden for patients, as the costs run into lakhs of rupees.

Currently, patients are approaching courts for getting directions to the government-owned Telangana State Medical Services Infrastructure Development Corporation to bear the medical expenses. However, experts say approaching courts is cumbersome, and that the state government should implement the policy.

The Centre has identified 450 rare diseases like Gaucher's disease and Lysosomal disorders out of 5,000 such diseases. The state should also set up a corpus fund dedicated for rare disorders.

The corpus will not be for blood disorders like haemophilia, thalassemia and sickle cell anaemia, as separate government programs exist for them already.

Dr Ashwin B Dalal, an executive committee member of Indian Academy of Medical Genetics, said, "The Union government came up with a national policy for treatment of rare diseases in 2017 and allotted a corpus fund of Rs 100 crore to help patients suffering from rare diseases. State governments should come forward and implement the policy to help such patients."

The cost of treatment of any of the rare diseases is very high due to which the Centre came forward. So far, Karnataka is the only state that has come forward to be a part of the policy.

Dr K Ramesh Reddy, director, medical education, said, "Patients suffering from rare genetic disorders are approaching courts and getting the orders. We are bearing the costs of the treatment based on the court orders. They get diagnosed in a private hospital and based on the prescription given, they approach the court. Sometimes, the medical expenses run into crores."

Bengaluru-based Organisation for Rare Disease India, an NGO, had written letters to all the states seeking to expedite the process of providing treatment to rare disease patients by implementing the rare disease policy.

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Source: The Times of India
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