BENGALURU: In an ongoing case in the Karnataka High Court over the treatment of patients with Lysosomal Storage Diseases (LSDs), it was revealed that while the State Government has been funding patients’ enzyme replacement therapy, the Union Government has not disbursed aid since 2016. The funding for treatment from the State Government for patients at the Indira Gandhi Institute of Child Health (IGICH), will be till July this year. The IGICH will face a serious difficulty from August 2021, the High Court observed on June 18 this year.
The LSDs are serious chronic, debilitating and fatal disorders, often requiring long term, specialised treatment and chronic management, causing severe disability. “The State Government has been funding the treatment for 22 patients for the last three years and 10 more new patients are expected next month. The court ordered the Centre to pay 40% of the cost… but that has not happened till date and the funding by the Karnataka government will end by July,” said Prasanna Shirol, founder, Bengaluru-based Organisation for Rare Diseases India (ORDI).
He said that the Centre has never funded treatment for such patients in Karnataka. “The Centre came out with a rare disease policy this year which stated that for LSDs, a website will be created to initiate crowdfunding,” Shirol added. The LSD cases being treated in IGICH include Pompe, Gaucher and Mucopolysaccharidosis. The treatment for these costs Rs 40 lakh per patient weighing 10 kg and the infusion has to be done either once a week or once in 15 days, depending on the type of disease.
“As stated in the memo, for the first four months of this financial year, the amount required for treatment is Rs 563.1 lakh and a provision will have to be made for the 10 new cases… therefore, the total amount required for the first four months of the current financial year is Rs 629.8 lakh,” the court observed on April 23 this year. Dr Sanjay KS, director, IGICH, said that they give a list of patients to the government every few months and based on that, funds will be released.
“They have now released Rs 2 crore to treat all rare diseases at our centre. The Central funds have not come in… but the state has been funding for three years,” he said. Till now, treatment has not been interrupted and once the court orders it, more state funds will be released and it won’t be a problem, assured Dr Sanjeev, associate professor, Paediatrics, IGICH. The next hearing is on July 2, 2021.