LSDSS demands corpus fund for diagnosis and treatment of rare disease
Elaborating on the need for government intervention, LSDSS president said Gaucher can be a life threatening condition if is not treated on time. There are around 26 children in Rajasthan who have been diagnosed with Gaucher and it is important that they receive proper treatment timely.jaipur Updated: Oct 30, 2017 19:52 IST
Jaipur: Lysosomal Storage Disorders Support Society (LSDSS) has asked the state government to create corpus fund from the annual state budget for better diagnosis and treatment of rare diseases.
LSDSS president Manjit Singh on the International Gaucher Day organised an awareness programme at JK Lon Hospital in Jaipur on Monday. Parents with their children suffering from rare diseases along with JK Lon hospital superintendent Dr Ashok Gupta and Dr Lalit Bharadia, paediatric gastroenterologist from a private hospital, were present.
Gaucher disease is one of the most common LSDs and is a very serious condition wherein people lack an important enzyme which is responsible for breaking down a specific type of fat molecule. Enzyme replacement therapy (ERT) is required every fortnight. It is a very expensive treatment and many are unable to afford it.
Elaborating on the need for government intervention, LSDSS president said Gaucher can be a life threatening condition if is not treated on time. There are around 26 children in Rajasthan who have been diagnosed with Gaucher and it is important that they receive proper treatment timely.
“I would like to request the Rajasthan government and the State Health Minister to consider creating a corpus fund from the annual State health budget for the better diagnosis and treatment of rare disease patients. Since health is a state subject, the onus lies on the state health ministry to take care of these people,” he said. He also appreciated the efforts taken by Dr Gupta and his team for setting up an exclusive rare diseases unit at JK Lon Hospital for providing diagnostic testing and facilitating infusion treatment for the disorders.
Dr Gupta said, in Rajasthan, a policy proposal for appropriate treatment and diagnosis of rare diseases had already been submitted in 2015. He said, “There are some patients who are getting treatment under charitable programs and are leading normal lives. In order to ensure that the treatment can be accessed by the rest of the patients, government intervention is required”.
“A policy proposal has already been developed and Rajasthan is the first state which is providing formal education and patient support for LSDs. The unit at JK Lon Hospital for rare diseases has been functional for the past three years and has benefitted 300 patients since its inception,” added Dr Gupta.
Dr Bharadia said patients suffering from this condition often lead an incapacitating life. It, thus, becomes important to emphasise on the timely treatment and diagnosis of Gaucher. The good news is that timely treatment can help these patients lead a normal life. “There is a need for an effective state level intervention to help patients afford the expensive treatment,” he said.