More funds sought for treatment of patients with rare diseases

Lysosomal Storage Disorders Support Society (LSDSS) has sought more funds for treatment of patients with Lysosomal Storage Disorders (LSD).

The state government has provided Rs 1 crore for treating LSD patients at the Indira Gandhi Institute of Child Health. However, members of the LSDSS fear that these funds might not be sufficient to offer treatment to all the patients. 

Manjit Singh, President, LSDSS, said: “The recent funding of Rs 1 crore from the government is a welcome step as such an initiative has been undertaken in Karnataka for the first time.

“It was done following the interim order of the High Court on July 25, 2016. The amount needs to be increased to bear treatment costs of all patients with treatable LSDs in Karnataka.”

He explained that the cost of treatment varies between Rs 40 lakh and Rs 1 crore per patient annually, depending upon the body weight of the patient. “We have to ensure that there is continuous flow of funds so that patients’ lives are not compromised with,” he added.

LSDs are rare, life-threatening, chronically debilitating diseases that affect mostly children, who often die within a few months or years after birth. Treatment in the form of ERTs provide a ray of hope to such patients.