The Delhi High Court has directed the AAP government to expeditiously process applications of patients suffering from rare genetic disorder called Gaucher (LSD) for free Enzyme Replacement Therapy (ERT) under the National Policy for Treatment of Rare Diseases (2017), while taking note to Centre’s submission that it has asked the National Health Mission to earmark Rs 100 crore towards central assistance for such cases.
Justice Manmohan directed the Delhi government to designate at least two hospitals for providing treatment to patients of Gaucher.
The court said so when advocate Ashok Agarwal submitted that one Sajid Khan, father of 5-year-old patient baby Insha, had applied to Delhi and Central Government for free treatment, but has not received any response from Delhi Government.
Agarwal said the Centre asked Sajid to apply before the state government which will process his request for treatment in designated hospital.
The high court thereupon directed Delhi Government to designate at least 2 Delhi Government hospitals where such patients can be provided treatment. The court told Ramesh Singh, standing counsel for Delhi Government, to personally look into this matter and ensure that the case of Insha and other similar cases are dealt with on urgent basis and patients are provided ERT.
Meanwhile, the Centre submitted an affidavit stating that the National Health Mission has been asked to earmark Rs 100 crore towards central assistance to states as well as central share of 60 per cent of the approved cost for treatment of rare and genetic diseases.
An expert committee has been constituted to consider requests for treatment and to consider cases which can be funded.
A separate rare diseases cell is also being established in the Ministry of Health and Family Welfare to exclusively handle such cases, the affidavit said.
An online portal is also being developed for patients, care-takers, hospitals and states to enable them to apply for central assistance for rare diseases.
It is to be noted that Justice Manmohan had ensured free treatment for the minor son of a rickshaw puller in 2015 while pulling up the agencies concerned during extensive hearings.
In August 2017, he had asked the Centre to take urgent steps to make the National Policy for Treatment of Rare Diseases functional at ground level.