The Tamil Nadu government has informed the Madras High Court it would set up a panel of doctors from various branches of medicine, including Ayurveda, to evolve a plan to combat the rare and potentially fatal Lysosomal Storage Disorders (LSDs) at a lesser cost.
LSDs are a group of 40 plus rate, genetic disorders which affect one in about 8,000 live births. A patient with LSD not only develops physical deformation in cell structures, but these cells often die resulting in a wide variety of clinical symptoms, according to petitioner LSD Support Society of India.
It has sought a high court direction to the Tamil Nadu health department to ensure free, uninterrupted and definitive treatment to the patients suffering from the disease.
During the hearing of the petition before a division bench of Justices Vineek Kothari and C V Karthikeyan, Advocate General Vijay Narayan submitted that the treatment would cost Rs 4-5 lakh per month per patient and as of now, there were 132 patients in Tamil Nadu.
The financial requirement per month for treating the patients would be Rs 66 crore and as it is going to be a continuous process, the government has to allocate Rs 700 crore per year, the AG submitted.
Hence, the government would like to constitute a committee of doctors dealing in different branches of medicine, including Ayurveda, Homeopathy and Allopathy, to discuss with them whether a plan for managing this disease can be evolved at a lesser cost, he said.
The petitioner said the prognosis of LSDs witnesses progressive accumulation of partially degraded compounds in vital organs which results in multi-organ malfunctions, adversely affecting their quality of life and eventually leading to failure to thrive, causing death.
Enzyme Replacement Therapy, used for managing the disorders, is extremely expensive, the petitioner said.
The petitioner had approached the state health department and apprised the plight of the patients suffering since 2014 and sought requisite medical treatment. As there was no response, the petitioner approached the court.
When the matter came up on Wednesday, the secretary, health and family welfare department, filed a counter stating that LSD symptoms are generally progressive.
"There are nearly 50 of these disorders altogether and they may affect different parts of the body, including skeleton, brain, skin , heart and central nervous system," the counter said.
The counter further said there was currently no approved treatment for LSDs.
"Enzyme Replacement Therapy is costly...and a single source of manufacturing/ marketing company is Sanofi Limited is producing the medicine required for treatment for this metabolic disorder in India."
The AG said he would also consult Additional Solicitor General G. Rajagopalan, representing the Centre, on setting up the committee and evolving a suitable plan for management of the disease at a lesser cost and place the details before the Court.
The bench posted the matter to September 30 for further hearing.
