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TN Govt. nod awaited to treat children with rare diseases
Posted on: 20/Mar/2019 10:18:55 AM
A 9-year old boy is diagnosed with a very rare disorder. He is in need of Enzyme Replacement Therapy for which he is awaiting for approval by the state government.
The government has still not arrived at a decision. This is making his mum panicked as she is seeing his sons condition getting weakened day by day. With treatment, further worsening can be prevented.
The mother says his son was diagnosed with the disorder called mucopolysaccharidosis when he was just 2.5 years. He could not walk properly. Though he goes to school, he will not be able to write like other fellow students of his age. To prevent worsening of his present condition, doctors say ERT is required. His condition is already assessed and selected for the treatment procedure. Now, the government has to give its approval to treat him with ERT which is for a group of different children suffering with very rare disorders of which my son is one.
It remains risky
A total number of 27 patients list all of whom are suffering with Lysosomal Storage Disorders are sent across from the State Technical Committee and waits approval by the state government. For LSD, waiting for longer is highly risky, say parents as well as LSDSS members (LSD Support Society members).
In fact, about 4 such children lost their lives in Tamil Nadu in the past 1 year. The government is also well aware of these deaths. For children suffering with LSD, ERT is the only life saver, says M.Raja, the Joint Secretary and State Coordinator, LSDSS in Tamil Nadu.
A few months ago, a PIL was filed with the Madras High Court. To this, the court responded with its instruction to give out the necessary treatment procedure to the patients without any kind of delay, recalls Mr. Manjit Singh, the national president, LSDSS.
Following this, a committee was formed and within 2 months, the 1st meeting was conducted. The health condition of children were assessed and detailed reports are shared to the Health Department. Until now, the treatment is not yet started.
It is to be noted that there are 18 children on the whole who avail free treatment via international charitable support.
