Karnataka govt. seeks corporate support for treating children battling rare and ultra rare diseases

With the annual cost estimated to be about ₹1 crore for each child requiring treatment for ultra-rare diseases, the Medical Education Department has sought corporate support to meet the expenses. Currently, 22 children with ultra-rare diseases are undergoing treatment at Indira Gandhi Institute of Child Health (IGICH) here.

With the annual cost estimated to be about ₹1 crore for each child requiring treatment for ultra-rare diseases, the Medical Education Department has sought corporate support to meet the expenses. Currently, 22 children with ultra-rare diseases are undergoing treatment at Indira Gandhi Institute of Child Health (IGICH) here.

The State government is seeking sponsorship to adopt a child’s treatment for the Lysosomal Storage Disorders category of ultra-rare diseases that can cost between ₹20 lakh and ₹40 lakh annually. For 22 children undergoing treatment for this category, an estimated ₹12 crore to ₹13 crore is needed every year. The government is seeking that corporates adopt one child per year, contributing ₹50 lakh to ensure life-saving treatment.

Hundreds of children across the country, including those in Karnataka, suffer from rare and ultra-rare genetic disorders, and the cost of treatment for many of these conditions can annually go up to several lakhs, a release from Minister for Medical Education, Skill Development and Livelihood Sharan Prakash Patil stated. “To ensure effective, appropriate and timely treatment for such children, the Karnataka government is planning to collaborate with corporate entities under a structured initiative,” he added.

The release said that many children have been diagnosed with Lysosomal Storage Disorders (LSDs) – a group of ultra-rare genetic diseases that includes conditions like Gaucher and Pompe, both of which have been identified in Karnataka. It said that under the National Policy for Rare Diseases, the Centre provides grants to support treatment for such patients. Since 2016, children affected by these conditions have been receiving care at the IGICH in Bengaluru, which is one of the 13 Centres of Excellence for Rare Diseases that have been identified in the country. The annual cost of treatment per child is a minimum of ₹50 lakh and could exceed ₹1 crore, it added. 

According to the release, 22 children are receiving treatment at IGICH with ₹50 lakh funds allocated to each child. The Karnataka government has so far released ₹76 crore to the institute, and a proposal for additional funds from the Centre has been submitted.

To seek funds, the Minister has asked officials to send a letter to corporate houses, urging them to adopt children for treatment under their corporate social responsibility initiatives. Meanwhile, Dr. Patil has also asked the IGICH Director K.S. Sanjay to utilise a portion of corpus fund to treat the children.