The Delhi High Court on Monday directed the petitioners, who are children suffering from a rare disease called Duchenne Muscular Dystrophy (DMD), to contact the Nodal Officers, of various hospital, listed as Centres for Excellence by the Central Government, in a plea seeking direction for the government to ensure that these children are provided free treatment for DMD.
A single-judge bench of 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 rarediseases.
The Court further directed, the Centre to ensure the Nodal Officers upon examination of the petitioners, if satisfied, upload the names of petitioner to rarediseases.nhp.gov.inwithin 10 days.
On 11 August 2021, in WP (C): 3662/2021, 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.