31st May 2019, Bengaluru: Rare disease patients’ struggles seem to be never ending in Karnataka. What is even more shocking is that despite several judicial orders treatment hasn’t been provided to the concerned patients. Parents of rare disease patients have approached Health Ministry and Health Secretary numerous times in last three months, but no one seems to be coming forward to their rescue.
While there are 13 patients who are currently on treatment in Indira Gandhi Institute of Child Health but for new patients getting treatment has become a never-ending fight. Many judicial orders have stated to give treatment to all minors but that has never been followed. Each time a patient is diagnosed, family has to undergo long judicial procedure to make health authorities listen to their plight. But now even court orders aren’t enough for Karnataka Health Ministry to provide treatment to patients.
In February 2019, the High Court of Karnataka has ruled in favor of 4 new rare disease patients who had applied to seek treatment support from the government. The order directed the State Government to provide appropriate treatment support to these new patients. The new set of patients consisted of 3 Gaucher patients and 1 Adult Pompe patient. Even after 3 months, this judicial intervention has not been acted upon by the Karnataka government
Parents of these patients have met Mr. Jawaid Akhtar, Principal Secretary to Government of Karnataka, Medical Education, to get a clarity on the treatment support allocated for them. Unfortunately, they didn’t receive a concrete response. It was second time in a row when Mr. Jawaid has told them that we will let you know.
“As parent seeing your child suffering from any disease is painful. Moreover, seeing them struggling to get treatment has added to our suffering. Its been 3 months since the court order. We keep visiting the officials to get clarity, but they never give us a tangible answer and say that there is lack of funds. We are scared that we might lose our child owing to delay in treatment. We request the Government to help our child live a better life.” said parent of Gaucher patient.
Commenting on the situation Prasanna Kumar B Shirol, Co-founder & Executive Director, ORDI said, “Patients’ condition is deteriorating day by day. Delay in treatment can cost them their life. The need of the hour is to provide treatment on immediate basis. Patients and families can’t keep running from door to door even after judicial intervention. Health is a state subject and it is of utmost importance for the Karnataka Government to address the needs of these rare disease patients. Karnataka Government shouldn’t wait for Center’s direction to save lives of its own people. Government should bring its own policy to provide treatment to patients suffering from rare disease.”
The onus now lies with the state government to ensure immediate treatment initiation for the patients and take charge of better management of rare disease by timely intervention at all levels.
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