Medical Education Dept Seek Corporate Support for Treatment of Children Suffering from Ultra-Rare Diseases

Bengaluru Express
Bengaluru, April 7: Hundreds of children across India—particularly in Karnataka—suffer from rare and ultra-rare genetic disorders. Treatment for many of these conditions can cost several lakhs of rupees annually. To ensure effective, appropriate, and timely treatment for such children, the Karnataka government is planning to collaborate with corporate entities under a structured initiative.

In this regard, Dr. Sharan Prakash Patil, Minister for Medical Education, Skill Development and Livelihood and Raichur district in-charge, has taken proactive steps to establish a viable framework.

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 identified in Karnataka.

Under the National Policy for Rare Diseases (NPRD), the central government provides grants to support treatment for such patients. Since 2016, children affected by these conditions have been receiving care at the Indira Gandhi Institute of Child Health (IGICH) in Bengaluru. The treatment cost per child is minimum Rs 50 lakh to over Rs 1 crore per annum. Thirteen Centers of Excellence for Rare Diseases have been identified nationwide, and IGICH is one among them.

Currently, 22 children are receiving treatment at IGICH with Rs 50 lakh in funding allocated for each. So far, the Karnataka government has released a total of Rs 76 crore to the institute. Additional funding requests have been submitted to the central government.

Minister Dr. Patil is actively working to ensure continuous treatment for these children. He believes that partnerships with corporate entities could bring hope and light into the lives of these children. As part of efforts to reduce the financial burden, Dr. Patil has directed Dr. K.S. Sanjay, IGICH director, to utilize a portion of the institute’s corpus fund to cover treatment expenses.

He has also instructed that letters be sent to corporate houses, urging them to adopt children for treatment under their corporate social responsibility (CSR) initiatives. Companies are encouraged to either adopt a child and cover their annual treatment cost or contribute financially to the cause. Minister Patil expressed confidence that this initiative will be implemented in the very near future.

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Adopt a Child, Sponsor Treatment
Treating Lysosomal Storage Disorders, a category of ultra-rare diseases, can cost Rs 20–40 lakh annually. Karnataka currently has 22 such children, and it’s estimated that Rs 12–13 crore is needed every year for their treatment. Medical education dept’s appeal is for corporate houses to adopt at least one child per year by contributing Rs 50 lakh, thereby ensuring life-saving treatment.

*Annual treatment cost estimated at nearly crore rupees per child

*22 children undergoing treatment at Indira Gandhi Institute of Child Health

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