The Centre has admitted before the Delhi High Court that although it stated before the court that a Rs 100-crore corpus was created for treatment of rare diseases, no such fund was ever allocated as initial corpus for treatment of life-threatening disease under the National Policy on Treatment of Rare Diseases (NPTRD).
The Ministry of Health and Family Welfare also submitted before a bench of Justice Manmohan that it has decided to frame the policy again after it realised that health is a state subject, and that concurrence of most states had not been obtained before framing the policy.
The ministry stated this in an affidavit, filed following the court’s November 30 direction asking it to furnish details of the policy.
“The most important limiting factor for implementation of the existing policy was supporting it under the National Health Mission (NHM). The mandate of NHM is only primary, and secondary care and does not cover management tertiary care. Rare diseases management mostly fall under tertiary care,” the affidavit, filed by the Central government’s standing counsel Shiva Lakshmi, stated.
“The other important difficulty in implementation is that though in the affidavit dated 14.3.2018 it was stated that Rs 100 crore corpus has been created under the NHM, no such corpus was created under NHM. This occurred under an honest mistaken belief that the funds under NHM could be earmarked.”
The court’s direction came on plea by three children, who, through their counsel Ashok Agarwal, sought direction for treatment of rare diseases.
A petition on behalf of families of patients of rare diseases has sought government aid for treatment. It states that the ESI has the obligation not only under the Employees’ State Insurance Act but also Article 21 of the Constitution, which guarantees every person the right to life with dignity.
On other challenges, the ministry stated that “public health and hospitals is a state subject”. It stated, “During the stage of NPTRD formulation, it appears that owing to time constraints…consultation with states governments, particularly at draft stage, was not done…. Most states have not constituted state technical committees, as envisaged under the policy. Only six states (Delhi, Karnataka, Punjab, Gujarat and Jharkhand and Tamil Nadu) are reported to have constituted the states committees…”