Cal HC bats for more centres of excellence for rare diseases in state
Times of India | 5 June 2025
Kolkata: Persons suffering from rare diseases should be treated as a "class of themselves", the Calcutta High Court observed while suggesting the state increase the monthly stipend from Rs 1,000 to Rs 5,000.The division bench of Chief Justice TS Sivagnanam and Justice Chaitali Chatterjee (Das) has now requested Additional Solicitor General (ASG) Ashoke Kumar Chakraborti to examine the policy by the central govt on the establishment of more than one centre of excellence for rare diseases in a state. There is only one centre of excellence for rare diseases in the eastern region — IPGMER.The division bench was hearing a PIL filed by parents of children suffering from muscular dystrophy, a rare disease. On the court's inquiry, the state informed that they pay a monthly stipend of Rs 1,000 to people suffering from rare diseases, the same as the amount paid to persons with disabilities."...Assist the court as to what directions can be issued so that another centre of excellence can be established in Bengal since the court is informed that not only patients from Bengal come here but also from the neighbouring states" the CJ told ASG."So far as persons suffering from rare diseases are concerned, they cannot be equated to a person who is normally classified as a person with disability. Though the person suffering from rare diseases is undoubtedly a person of rare disability, the disability is more severe as it is a degenerative disease," the bench observed.The court suggested that the tablet "Deflazecort," which is the approved therapy for DMD, be given to the patients to cover the dosage for a minimum of two months. If the tablets dispensed are for a lesser period, then each time the patient needs to travel to the hospital, which is a herculean task for persons suffering from rare diseases. One of the parents of the patients in court, who happens to be an employee of the High Court, stated that his son recently became very sick, and since no ICU bed was available, he admitted his son to a private hospital. He was kept in the ICU for 10 days, and the cost incurred was very high and unmanageable.The state was directed to submit a report on June 27 on the establishment of three ICU units in the police hospital, which will provide exclusive care to persons suffering from rare diseases, apart from the facility available in the SSKM hospital and the other hospitals situated in and around the police hospital. "This is so required because high-speed oxygen is required for the patients, and in the event there is no bed available in the SSKM hospital main campus, then the patient will be put to irreparable hardship," CJ stated. The state was also directed to take expeditious decisions and ensure that the five mechanised wheelchairs are procured and supplied to the hospital no later than June 13. The court also asked the state whether a subsidy can be given for the purchase of a mechanised wheelchair.