CHENNAI: In a bid to make treatment and diagnosis of rare genetic disorders affordable, the state government opened a genetic clinic, the first-of-its kind in the government sector in the state, at the Institute of Child Health, Egmore on Thursday.
The clinic, which was inaugurated by Health Minister C Vijaya Baskar, will offer hope for children with rare diseases such as lysosomal storage disorders, who require enzyme replacement but cannot afford the otherwise expensive procedure.
“It would cost lakhs for parents in private hospitals as it has to be procured from other countries. Also, it is a life-long treatment and so, many parents could not afford it. A few children get sponsors from trusts. Now, this treatment can be offered at the ICH itself for free of cost,” said Dr Srilakshmi, Head, Department of Medical Genetics, Tamil Nadu Dr MGR Medical University who is part of the treating team at the ICH.
This means that now even the poor can have access to treatment and early diagnosis free of cost. The Genetic Department at the ICH sees around 1,000 children a year with rare diseases including lysosomal storage disorders. But, it did not have the facility for laboratory diagnosis and also for the treatment.
Also for the new-born, a molecular analysis test must be done to diagnose genetic disorders, but till now, the institute used to send samples to AIIMS, Delhi, JIPMER or to other institutions outside the state. Now, it can be done here, Srilakshmi added.
“The Union and state governments are funding the facility. Sixty per cent of funds will come from the Union government and 40 per cent from the state government,” said Dr A T Arasar Seeralar, Director, ICH.
The clinic will function under the Genetic Department of the Institution on Wednesdays and Saturdays.
The minister, who also inaugurated a simulation lab at the ICH for training in first aid to medical staff and the doctors, said the Japan International Corporation Agency (JICA) would fund `1,634 crore to carry out infrastructure development and equipment procurement at various government hospitals.
The minister inaugurated the facility as part of the celebration of one-year completion of establishment of the out-patient building at the ICH by JICA.
Health secretary J Radhakrishnan, Director of Medical Education Dr A Edwin Joe, senior representative of JICA India Toru Uemachi, consultant of the JICA India office Junko Yamada, and other officials participated in the function.
Lysosomal storage disease
What: They are are inherited disorders which occur from a ‘lack of specific enzymes that break down certain lipids (fats) or carbohydrates (sugar) in the body cells. All forms of LSDs are ‘progressive’.
How: If these enzymes are absent, the body has trouble in breaking down certain lipids. When that happens, fats and sugars start to accrue in cell lysosomes. These active enzymes end up throwing normal bodily functions out of the window.
7700
Thought to affect roughly 1 in 7700 births
40
No of different types of LSDs