For the past three months, parents of children suffering from rare diseases have been running from pillar to post at IPGMER failing to get medicines for their dear ones. The President of India released Rs 40 crore on 8 May to seven centres in the country to give treatment to those suffering from rare disease under the National Policy for Rare Diseases 2021.

The money was sent to the Pay and Accounts Officer, ministry of health and family welfare, Nirman Bhavan, New Delhi. The ministry has a rare disease cell to oversee the treatment of such children. The commonly reported rare diseases in India are haemophilia, thalassemia, sickle cell anaemia, primary immunodeficiency in children, auto-immune disease, Lysosomal storage disorder such as Pompe disease, Hirschsprung disease, Cystic fibrosis etc. To combat the diseases in children the seven institutes that have received money from the ministry of health are:

All India Institute of Medical Sciences (AIIMS), New Delhi that was given Rs 10 crore, MAMC, Delhi Rs 3 crore, SGPGI, Lucknow Rs 3 crore, PGIMER Chandigarh Rs 3 crore, IPGMER, Kolkata Rs 3 crore, KEM, Mumbai Rs 3 crore and CDFD-NIMS, Hyderabad Rs 3 crore. The money was paid to IPGMER through SBI. RKSIPGMER-SSKM donation for Rare Diseases. A/C 40168- 800247, IFSC SBIN0001768. The parents of children suffering from rare diseases, most of whom come from not so well-to-do families, preferring anonymity said,

“We are taking our children to get the medicines. They are costly if we procure from outside. Without assigning any cause, the supply of medicines has been stopped.” After coming to power in 2011, chief minister Mamata Banerjee made treatment in state-run medical colleges free. Swasthya Sathi cards were issued under where treatment up to Rs 5 lakh is free for the family members under whose name the card is issued. The card is issued in the name of a woman of the family.

A senior doctor of a staterun hospital said those suffering from rare diseases are taken to SSKM for treatment. The sufferers need constant monitoring and any delay in treatment can lead to situations that often become difficult to handle. Miss Banerjee has made several surprise visits to SSKM to ensure that best treatment is offered to the patients. Despite repeated efforts The Statesman failed to get in touch with NS Nigam, principal secretary of health department and Dr Debashis Bhattacharya, DME as both of them did not receive the call.