Hyderabad: Indecisive state troubles patients
Sixteen children who applied, have died in the last two years as the policy was being fine tuned'.
Hyderabad: There are around 186 applications lying with the Union Ministry of Health and Family Welfare for the treatment of rare diseases, under the National Policy for Treatment of Rare Diseases, for which Rs 100 crore was allotted 1 year ago. But now the policy itself has been abandoned. The applications were mostly of children with rare diseases, 47 of them were from below-the-poverty-line families. Sixteen children who applied, have died in the last two years as the policy was being ‘fine tuned’.
Manjit Singh, president Lysosomal Storage Disorders Support Society, says, “Non-allocation of the corpus will impede the treatment mechanism. Government should initiate treatment process for patients recommended by the state technical and medical committees. Policy cannot be made void. It can always be amended and implemented. The treatment is only for eligible patients whose applications are before the government. These can be scrutinised and treatment provided.”
But the government has cited a technical hurdle. When the National Policy for Treatment of Rare Diseases was formulated, the Centre did not take into account the amount that state governments would have to put in as health is a state subject. Moreover, the Union government now states that it does not have a proper definition of ‘rare diseases’, and there are no criteria for the eligibility of patients for the receipt of funds.
Further, the government says that the policy can’t be implemented under the National Health Mission, as rare diseases require specialists who fall in the tertiary healthcare sector, while the NHM is only for primary and secondary healthcare.
Prasana Shirol, president of the Organisation for Rare Diseases in India says it took 10 years to get the government to understand and frame a basic policy for rare diseases.
“While the policy was being fine-tuned, they pulled back. The patients who were waiting for treatment have now been left in the lurch. The policy would have helped to gather a pool of patients under one umbrella for treatment. Presently, most of them are hopping from one hospital to another. If they are lucky, they get proper treatment. The policy and the budget was a hope for them which the government has taken away,” Mr Shirol said.