Policy on rare disease treatment discriminates against APL patients: Plea in HC

New Delhi: The Delhi High Court on Monday sought the Centre and AAP government's stand on two girls' pleas claiming that the National Policy for Treatment of Rare Diseases discriminates against patients above the poverty line (APL). Justice Vibhu Bakhru, before whom the petition came up for hearing, issued notice to the Ministry of Health and Family Welfare and the Delhi government seeking their replies to the two pleas which have challenged the Constitutional validity of the policy to the extent it creates an "artificial distinction" between those above and below the poverty line for providing financial assistance.

The petitions, on behalf of a four-and-a-half-year-old girl suffering from MPS-1 and a 10-year-old girl affected by spinal muscular atrophy (SMA) type-1, have claimed the treatment for the rare genetic disorders was very expensive and the parents were finding it difficult to afford the same.

The pleas, filed through advocate Ashok Agarwal, have claimed that the Centre's decision to not extent the financial assistance to them was "unreasonable, arbitrary and discriminatory".

While the four-and-a-half-year-old needs enzyme replacement therapy for her genetic disorder, the 10-year-old girl needs a drug called Spinraza manufactured by Biogen Inc and which is available in USA, Canada, Brazil, Europe and Japan where its usage has been approved, the petitions have said.

The pleas have sought that the benefit under the policy be indiscriminately extended to patients above the poverty line as well.

The court will hear the matter next on December 10.