HC seeks Centre's response on girl's plea to expedite rare disease treatment

New Delhi: The Delhi High Court sought the Centre’s response on Monday on a plea moved by a girl suffering from a rare disease, seeking directions to authorities to expedite the process of financial assistance and procurement of medicines for her treatment.

In the petition filed through her mother, the girl has said she is suffering from Spinal Muscular Atrophy (SMA) Type 1, a rare genetic disease that causes muscle weakness and is the most severe form of SMA that requires a life-saving gene therapy called Zolgensma.

Justice Sanjeev Narula issued a notice to the Centre and asked its counsel to get instructions from the authorities concerned.

The court said the Centre’s response should be filed before the next hearing on December 3.

The petitioner’s counsel said the gene therapy would cost around Rs 17.5 crore and since the girl comes from a middle-class family, she does not have the means to bear the exuberant cost of the treatment.

The counsel relied on the National Policy for Rare Diseases, according to which the government has identified and categorised such diseases.

The lawyer said the petitioner had made a request to the Union Ministry of Health and Family Welfare on August 16, seeking help for the procurement of Zolgensma and the representation is pending consideration.

The court was informed that the petitioner is registered with the All India Institute of Medical Sciences (AIIMS), one of the centres of excellence according to the policy.

However, for the procurement, the permission has to come from the National Rare Diseases Committee (NRDC), the petitioner’s counsel said.

The petitioner has sought a direction to fast-track the process of financial assistance and procurement of medicines. She has also sought directions to the NRDC to take a decision after receiving recommendations from the centre of excellence concerned.