AAP govt to set up Rs 100 cr corpus to treat rare genetic

The Delhi High Court was today informed by the AAP government that it will set up a Rs 100 crore corpus fund for treatment of rare genetic diseases.
The court was also informed that the central government will contribute funds towards the state corpus in the ratio of 60:40 and it would be used for only funding the entire treatment cost.
Justice Manmohan said that the court hoped and expected that the Cabinet of Delhi Government shall approve creation of a corpus fund for the rare diseases as "expeditiously as possible" as mentioned in minutes of meeting of January 29 under the chairmanship of Principal Secretary (Health).

"The Government of National Capital Territory of Delhi shall keep in mind the fact that the corpus fund of Rs 100 crore (already) created by the central government shall lapse on March 31, 2018," the court said.
Delhi government standing counsel Ramesh Singh also informed the court that it has been decided to constitute a Technical cum Administrative Committee for the state corpus which will be chaired by the secretary and have such technical experts as members as considered necessary and the panel will meet once in three months.
"The committee will identify and accredit institutions that will carry out diagnosis of rare diseases, and institutions that will provide treatment for rare diseases and the institutions that will both diagnose and treat rare diseases," he said.

The court was hearing a batch of petitions filed by patients of rare diseases like Gaucher, a genetic disorder.

The petitioners, through advocate Ashok Agarwal, have said they were denied treatment at the Employees' State Insurance Scheme of India (ESIC) hospitals here and did not have the capacity to bear the cost of the Enzyme Replacement Therapy (ERT).
During the day's hearing, the counsel said that two of the 122 patients require immediate medical attention as they were suffering from Spinal Muscular Atrophy (SMA) Type 1 disease and are residents of Delhi.
To this, the court asked their guardians to apply to Delhi government's Technical cum Administrative Committee for rare disease on February 5 and also asked the state to form a rare disease board within a week to consider these applications.

The court listed the matter for March 8 for further hearing.
The high court had earlier asked the Centre to take urgent steps to make the National Policy for Treatment of Rare Diseases functional at the ground level.
The petitioners counsel had earlier said that patients have been running from pillar to post to get treatment.