Kid suffering from rare disease in Rajasthan requires Rs 16 cr for injection

An injection worth Rs 16 crore is required for the treatment of Spinal Muscular Atrophy (SMA). But the child is two years old, hence, doctors recommended an oral medicine called 'risdiplam', which costs Rs 72 lakhs.

Jaipur: A two-year-old boy suffering from a deadly chronic disease called Spinal Muscular Atrophy (SMA) has been admitted several times at JK Lon Hospital in Rajasthan's Jaipur, however, there was no improvement in his condition. An injection worth Rs 16 crore is required for the treatment of this disease. But the child is only two years old, hence, doctors recommended an oral medicine called 'risdiplam', which costs Rs 72 lakhs. The medicine is given according to weight and the cost varies in that order. The child's weight is around seven kg, so the cost of the medicine will be around Rs 30 to Rs 32 lakhs.

The child needs to be administered 'Zolgensma' injection worth Rs 16 crore within two years, but it's impossible for the child's father to raise such a huge amount. Therefore, the boy's father appealed to Health Minister Parsadi Lal Meena for help regarding his child's health. The father said, "I have received a call from the Minister's office and was told by the doctors of JK Lon Hospital that oral medicine worth Rs 30 lakhs would be given to the child. Although this medicine is still awaited."

Since the treatment of rare diseases in the state is still very expensive and the common patient cannot bear the expenses for its treatment, the state government has created a crowdfunding portal for the treatment of rare diseases. Through this, financial assistance will be available to patients suffering from rare diseases.