Karnataka Expands Healthcare Coverage for Rare Disease Patients
In a significant move ahead of World Rare Disease Day, the Karnataka government announced on Friday that treatment for secondary complications in patients with rare diseases will now be fully covered under the Ayushman Bharat-Arogya Karnataka (AB-ArK) scheme. This coverage applies regardless of the patients' economic status, marking a major shift from the previous policy.
Details of the New Government Order
Previously, only rare disease patients in the priority household category received full coverage, while others were limited to 30%. Under the new directive, all patients registered at the Centre of Excellence for Rare Diseases (COERD) at the Indira Gandhi Institute of Child Health (IGICH) in Bengaluru can benefit. The coverage ceiling has been set at Rs 1 crore per patient.
Harsh Gupta, principal secretary of the health department, explained the rationale behind this decision: "Treatment for rare diseases themselves or the medications that stabilize disease progression are administered at IGICH. However, when these patients experience secondary complications, such as lung issues or injuries requiring surgeries, they often struggle to find coverage elsewhere. Therefore, we have decided to include these treatments under the government's health coverage scheme."
Background and Impact on Patients
Rare disease care in Karnataka has faced significant challenges over the past two years. With funds from the National Policy for Rare Diseases (NPRD-2021) failing to reach the nodal centre, enzyme replacement therapies have frequently been discontinued once patients hit the Rs 50-lakh limit. This new government order is expected to provide much-needed relief to affected families.
Dr. Sanjeeva GN, professor of paediatrics at IGICH and nodal officer for COERD, highlighted the importance of this move: "Patients with rare diseases often suffer from multiple complications and require costly treatments, including spinal surgeries in some cases. Their families have been forced to spend thousands or even lakhs of rupees out of pocket. Karnataka is likely the first state to bring treatment for secondary complications of rare diseases under a government health coverage scheme."
The initiative aims to alleviate financial burdens and ensure comprehensive care for rare disease patients across the state.
