In a significant development for rare disease patients, the Delhi High Court has issued a landmark judgment. This judgment brings hope and relief to those facing challenges accessing necessary medical aid. Let’s delve into the details of this impactful ruling and its implications for the medical community and patients in need.
Facts
- State Government of Uttar Pradesh has released Rs. 5 lakhs to AIIMS for persons with disabilities
- Dr. Madhulika Kabra to examine and provide necessary aids and equipment, including a motorised wheelchair, to the Petitioner within ten days
- Patients with rare diseases from outside of Delhi finding it inconvenient to travel weekly for infusions
- Coordination between Dr. Kabra, Medical Superintendent, AIIMS, and other officials to explore dispatching medications directly to local hospitals or clinics
- M/s. Sarepta Therapeutics supplied medicines for 14 patients through AIIMS, New Delhi.
Decision
- A meeting is scheduled between NRDC and M/s. Sarepta Therapeutics as directed by the court
- A proposal from M/s. Sarepta Therapeutics was made to the National Rare Diseases’ Committee on 9 May, 2024
Case Title: MASTER MEDHANSH JHAWAR @ MADHAV THROUGH HIS NATURAL GUARDIAN Vs. RAJESH BHUSHAN & ORS. (2024:DHC:3871)
Case Number: CONT.CAS(C)-415/2022
