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Draft policy on rare diseases notified
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- After being directed by the Madras High Court on Jan 6 to consider the issue of providing medical care to those suffering from rare Lysosomal Storage Disorders (LSD) as a “national emergency”, the Centre recently informed of having notified a draft national policy on rare diseases.
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- Additional Solicitor informed the court that the government had called for public opinion on the draft policy till February 15, and that it would be finalised only after considering the views of all stakeholders.
- PIL petition
(1) The submission was made during the hearing of a public interest litigation (PIL) petition filed by the Lysosomal Storage Disorders Support Society of India, based in New Delhi, in 2017.
(2) The petitioner’s counsel said the draft policy envisages provision of Rs. 15 lakh to those suffering from certain LSDs.
(3) He said the draft policy had categorised rare disorders amenable to one-time curative treatment such as Hematopoietic Stem Cell Transplantation and disorders that were amenable to organ transplantation into one group, and states that they could be provided with financial support.
(4) It further added that a maximum of Rs. 15 lakh could be provided to each patient under the umbrella scheme of Rashtriya Arokya Nidhi & that the beneficiaries would not be limited to families below the poverty line.
- After hearing the counsel, the Judges expressed their reservations over the sufficiency of allocating just ₹15 lakh and impressed upon the Centre as well as the State government to deliberate further after taking note of efforts being made globally to address needs of those suffering from rare diseases.
- The judges granted time till March 2 for the Centre to report back.
Sources
The Hindu