BENGALURU: On November 30, the Union Health Ministry submitted in the Delhi High Court that the National Policy for Rare Diseases, which was announced in February, was “illegally and erroneously framed”. Under this policy, a Rs 100 crore corpus was supposed to be formed for the treatment of sick children, which the ministry now says was never allocated. Currently, more than ten patients are being treated in the city with the Rs 8 crore given by the state government.
Bengaluru-based Organisation for Rare Diseases India (ORDI), has written to the union health secretary that six children have already died, and two are battling for life, while the ministry made a U-turn in court. Bengaluru is the only city to have a Centre for Excellence for Rare Diseases at the government-run Indira Gandhi Institute of Child Health.
“Six children have died and two are battling for their lives while waiting for treatment, as per the National Policy for Treatment of Rare Diseases. Several requests for treatment have been made directly by patients too,” wrote Prasanna Kumar B Shirol, co-founder and executive director, ORDI, in a letter to the union health secretary on December 10. ORDI had petitioned in the SC in October against states and union territories for failing to form technical committees, as well as identifying hospitals for treatment of rare diseases.
“Some state governments were ready to treat patients, but were waiting for the central committee’s approval. We were shocked to hear the MoH official’s statement. The official claimed the policy had been ‘illegally and erroneously framed’, which is contrary to the earlier statement made to the same court by MoH officials,” Shirol added.
“This is devastating. We need urgent action to facilitate treatment for these children and others who are awaiting treatment,” he said.
Currently, only six states, including Karnataka, Tamil Nadu, Kerala, Delhi, Jharkhand, Sikkim and Manipur, have formed technical committees. “Karnataka alone has sent 20 applications to the central technical committee out of the 100 applications received. No one has received treatment so far,” Shirol added.
In India alone, 450 rare diseases have been identified, and treatment for them can run into lakhs.