Rare disease patients’ never-ending ordeal

Bengaluru: Rare diseases are severe and chronic illnesses and are often life-threatening. They are disabling wherein the quality of life of a patient is compromised dramatically and they are unable to do even simple daily tasks. Adding to the burden of these patients are the hurdles faced at every level right from diagnosis to timely treatment. What is even more shocking is their prolonged battle for keeping their treatment continued. Rare disease patients’ struggles seem to be never ending in India.

The Indira Gandhi Institute of Child Health (IGICH) which is the center of treatment for rare disease treatment in Karnataka recently stopped providing treatment stating lack of funds. This forced the patients to go to high court again against Karnataka government and request for treatment continuation. After multiple hearings, the Karnataka government recently announced that it has allocated a fund of Rs 3 crores in IGICH. Despite having received the fund of 3 Crores from the Karnataka government patients are still awaiting details of the treatment which has left them in dismay. Its already been 10 weeks that the patients have stopped receiving their treatment and any further delay will deteriorate their health condition.

“We were assured of receiving continuous treatment when the Karnataka Government sanctioned funds for us in 2016. But since the past 10 weeks, our children are not receiving any treatment at IGICH. After the recent hearing at the high court, the Karnataka government has provided a 3-crore fund for treatment of rare disease patients. We are hopeful that IGICH will understand the plight of patients awaiting treatment and start the treatment immediately,” said Mr Shivashankar a Gaucher patient Revathi’s father.

Knowing the plight of rare disease patients, it is imperative that provisions for medications and treatment have to be made beforehand as lives of these patients is at stake. The delay in treatment can lead to worsening of their condition. Rare disease patients have requested IGICH to provide treatment to them without any further delay. The onus now lies with the hospital authorities to ensure Immediate treatment initiation for the children.

As a progressive welfare state, the Karnataka government has made provisions for treatment of rare diseases. Rare disease patients are hopeful towards continuity of treatment.