Bengaluru: Ahead of World Rare Disease Day, Karnataka govt Friday announced that treatment of secondary complications in patients with rare diseases will be covered fully under Ayushman Bharat-Arogya Karnataka (AB-ArK) scheme, irrespective of their economic status. So far, rare disease patients in the priority household category received full coverage, whereas other patients only got 30%.All rare disease patients registered at Centre of Excellence for Rare Diseases (COERD) at Indira Gandhi Institute of Child Health (IGICH) can benefit from the move. The ceiling is now fixed at Rs 1 crore.“Treatment of rare diseases per se or the medicine that stabilises progression of diseases, is administered at IGICH. But when these patients suffer from any secondary complications, like lung issues or falls and require surgeries, they find it difficult to get coverage anywhere. Hence, we decided to bring it under the govt’s health coverage scheme,” Harsh Gupta, principal secretary, health dept, told TOI. Rare disease care in Karnataka ground to a halt since two years. With National Policy for Rare Diseases (NPRD-2021) funds failing to reach the nodal centre, enzyme replacement therapies are routinely stopped after hitting the Rs 50-lakh per-patient limit. In this backdrop, the new govt order is expected to be of great help to the patients.“Patients with rare disease suffer multiple complications and need costly treatments, including spinal surgeries in some cases. Their families were forced to spend thousands or lakhs of rupees out of their pockets. Karnataka is probably the first state to bring treatment of secondary complications of rare diseases under the govt health coverage scheme,” said Dr Sanjeeva GN, professor of paediatrics, IGICH, and nodal officer for COERD.
