Next week, three children with Gaucher’s disease will get some relief as the Health Department will supply them with medicines. Though the Supreme Court had passed a verdict that the government, State and Central, should come forward to help the suffering children, very little financial support has come.
M. Raja, State secretary of the Lysosomal Storage Disorders Support Society, said though two years ago the Madras High Court had ruled that the State and Central government should each allocate Rs. 5 crore towards treatment of children with rare diseases the matching Central government funds are yet to materialise.
Meanwhile the association plans to appeal to the Chief Minister to allocate medicines through the government. “Each time we cannot go to court. So we are planning to seek the CM’s help,” Mr. Raja said.
In the State an estimated 40 children have rare diseases and of this 23 children have been identified for treatment. The court has approved treatment of 10 children but medicines are available only for six rare diseases, Mr. Raja explained.
Crowd funding for treatment
Parents of such children are pushing for implementation of crowdfunding mentioned in the new policy on rare diseases. The document was unveiled in March this year but governments have made no effort to implement it, rued Prasanna Shirol, co-founder of Organisation for Rare Diseases India. Parents such as Jamil and Rafiq Mohammed are fighting legal battles in Rajasthan for medical treatment. Their children suffer from Goucher’s disease. Both of them have lost a child each to the disease and have another child requiring treatment.
The policy calls for creating a digital platform to bring together notified hospitals where patients are being treated. The hospitals would share information about the patients, the diseases they are. suffering from, estimated cost of treatment and bank account details for online donation. The government would also organise conferences with corporates to motivate them to donate. The Ministry of Corporate Affairs would be requested to encourage public sector undertakings and corporate houses to contribute as per Companies Act as well as the provisions of the Companies.
