New Delhi, Sept 21, (ILNS) The Delhi High Court on Monday directed the the government to ensure that the children suffering from a rare disease called Duchenne Muscular Dystrophy (DMD) are provided free treatment for the disease.
A single-judge bench of Justice Rekha Palli directed the petitioners, who are children , to contact the Nodal Officers, of various hospitals, listed as Centre for Excellence by the Central Government.
Justice Rekha Palli slammed the Centre for the delay in uploading the names of the petitioner at rarediseases.nhp.gov.in. and expressed her displeasure at Central Government for not transferring Rs.193 Crores, which went unutilized from the previous two years budget for rare diseases.
The Court further directed, the Centre to ensure the Nodal Officers upon examination of the petitioners, if satisfied, upload their names on the rarediseases.nhp.gov.in portal within 10 days.
The court’s directions came on a plea filed by children suffering from a rare disease called Duchenne Muscular Dystrophy (DMD) seeking direction to the government to ensure that they are provided free treatment for DMD.
On 11 August 2021, the court had directed Centre to take steps to make sure that the unutilized amount of about Rs.63 Crores, collected by crowd funding in relation to an infant suffering from rare diseases, lying before the Kerala High Court, is transferred to rare diseases fund. The Centre in an affidavit filed before the court stated that, as it was not a party to the case at Kerala High Court, it was unable to procure the funds. The Court found these submissions ‘ unacceptable’.
The Court has further directed the Centre and AIIMS to file a status report regarding the compliance of the orders passed.
ASG Chetan Sharma appearing for the Centre assured the court, it’s orders will be complied with, in a period of one week and stated that it was not an adversarial litigation.
The matter is listed for further hearing on October 27, 2021./ILNS/SR/KR/SNG