The Andhra Pradesh Government has been urged to bring a group of rare genetic disorders known as Lysosomal Storage Disorders (LSDs) under the Arogyasri health insurance coverage as the treatment was expensive and beyond the reach of the common man.
LSDs are a group of over 45 rare genetic disorders caused by deficiency of specific enzymes in special compartments (lysosomes) of cells. Six of them can be treated by Enzyme Replacement Therapies (ERTs). They occur in about one in 5,000 live births and around 300-400 patients in the country were diagnosed with treatable LSDs.
Series of workshops
With February 28 being observed as ‘Rare Disease Day’ worldwide, the Lysosomal Storage Disorders Society (LSDS) in India has decided to conduct multiple workshops across the country during the month to create awareness on the life-threatening LSDs, its president, Prasanna Kumar Shirol, told reporters here. He said patients suffering from LSDs do not have access to treatment and only government intervention could save them.
Dr. A. Radha Rama Devi, senior consultant paediatrician and in-charge genetic division, Rainbow Hospitals here said one of the major challenges was delay in diagnosis due to low awareness among medical practitioners, which could lead to various complications. She said government support was crucial in managing these patients.
Dr. Lokesh Lingappa, consultant paediatric neurologist, Rainbow Hospitals, said the workshops were aimed at creating awareness about the rare disorders among the people, media and medical fraternity.