The recent judgement by Delhi High Court in the case of AIIMS vs State Government of Uttar Pradesh has brought relief to patients suffering from rare diseases. The court’s decision to release funds for medical aids and equipment will greatly benefit those in need of regular treatment, ensuring accessibility and improved healthcare. This ruling marks a significant step towards enhancing medical support for individuals with rare diseases.
Facts
- State Government of Uttar Pradesh has released Rs. 5 lakhs to AIIMS for person with disabilities.
- Dr. Madhulika Kabra is requested to examine the Petitioner and provide necessary aids and equipment, including a motorised wheelchair, within ten days.
- Patients suffering from rare diseases have difficulty in travelling to receive infusions every week.
- AIIMS has received the amount from the State Government of Uttar Pradesh.
- Dr. Kabra is authorized to take necessary steps to facilitate the process for these patients.
- Efforts are being made to explore the possibility of dispatching medications directly to local hospitals or CoEs for infusion.
- M/s. Sarepta Therapeutics supplied medicines for 14 patients through AIIMS, New Delhi.
Decision
- NRDC and M/s. Sarepta Therapeutics to schedule a meeting as per convenience of committee members
- Status report to be filed before the next date of hearing
- Proposal made by NRDC to M/s. Sarepta Therapeutics on 9 May, 2024
Case Title: ADARSH SONI THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH. VIJAY KUMAR SONI Vs. UNION OF INDIA & ANR. (2024:DHC:3871)
Case Number: W.P.(C)-8996/2023
