In May, the central government had finally submitted its rare disease policy to the high court.
New Delhi: In a hearing in the Delhi high court, Justice Manmohan remarked that states should show urgency in dealing with rare diseases, although health is a state subject in India.
He also noted that the central government had taken some constructive steps on the issue but that state governments were not. He said there should be at least one designated hospital in each state to look after patients with rare diseases.
In May, The Wire reported that the Union government had submitted the new rare disease policy to the Delhi high court. This was in compliance with the high court’s order last November directing the government to finalise a policy on this, as a large number of individual patients were appealing various courts for treatment. According to the policy, “hapless parents” were having to approach court for directions to get drugs for free. Insurance companies also deny patients coverage for rare diseases.
The central government has formed a Central Technical Committee to process cases of patients with rare diseases.
“Currently, a corpus of Rs 100 crore has been allocated by the health ministry for rare disease patients, under the new national policy. The states are entitled to a share of this corpus and should come forward and ask for it,” said Ashok Agarwal, advocate for several of the patients who have approached court on this. The centre-state ratio in this corpus of Rs 100 crore is 60:40.
A rare disease is a health condition which affects a small number of people. They include genetic diseases, rare cancers, infectious tropical diseases and degenerative diseases. Treatment of rare diseases is long, expensive and difficult. As a result, several patients have individually approached courts for relief on this.
For example, according to the government’s own estimates, a child requiring enzyme replacement therapy for their rare disease might have to pay between Rs 18 lakh and Rs 1.7 crore annually for treatment.
The government’s corpus is designated to be used for rare genetic disorders only, and not for rare blood disorders or rare cancers.
Corporates and public sector undertakings have been specifically called upon in the policy to donate towards rare disease treatment. Different ministries and departments of the government have also been called upon to collaborate, such as the Department of Pharmaceuticals, the Ministry of Corporate Affairs, the Department of Revenue and the Ministry of Labour and Employment.
The Delhi high court is hearing a batch of 13 patients in this case. The next hearing on the matter will be in February 2018.