HC: Study global care to evolve national policy for rare diseases

The Madras High Court asked the Centre and State governments to account for the impact of rare diseases globally while deliberating on such issues so as to improve the condition prevailing here and meet the challenge with adequate budgetary allocation.

The first bench comprising Chief Justice AP Sahi and Justice Subramonium Prasad gave the suggestion while hearing a public interest litigation seeking aid from the government to undertake the treatment of a rare disease, Lysosomal Storage Disorders (LSD), that causes disorders of various dimensions that are ultimately fatal.

The plea submitted that the cost component of treatment of the disease has now become primarily the only hurdle requiring intervention by both the State and central government.

In continuation of the hearing and directions passed, the bench cited papers published at the International level reflecting the exercise that has beenundertaken at the national level to meet the challenge by preparing a national policy and bringing about the legislation, and also making adequate budgetary allocation.

Based on this, the bench asked the State and the Centre to take note of the care offered globally for patients with rare diseases while evolving a national policy. “It has been pointed out by the counsel for the petitioner that a sum of Rs 15 lakh as one-time measure has been indicated in the draft policy for those affected with such rare diseases,” it said.

However, noting that the amount may not be sufficient to meet the challenge and the nature of the disease which is sought to be tackled, the bench added: “It is still open for the parties to deliberate upon it and we would therefore post it after two weeks to enable us to be apprised about any such future decision having been taken on the suggested lines.”

The bench then posted the case for further hearing to March 3.