Draft national policy on rare diseases published, Centre tells Madras HC

Judges not satisfied with provision of ₹15 lakh for one-time curative treatment

Published - February 11, 2020 04:26 am IST - CHENNAI

After being directed by the Madras High Court, on January 6, to consider the issue of providing medical care to those suffering from the rare Lysosomal Storage Disorders (LSD) as a “national emergency”, the Centre on Monday informed the court of having notified a draft national policy on rare diseases.

The First Bench of Chief Justice Amreshwar Pratap Sahi and Justice Subramonium Prasad were told by Additional Solicitor General G. Rajagopalan 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

The submission was made during the hearing of a Public Interest Litigation (PIL) petition filed by Lysosomal Storage Disorders Support Society of India, based in New Delhi, in 2017. The petitioner’s counsel V. Ramesh said the draft policy envisages provision of ₹15 lakh to those suffering from certain LSDs.

He pointed out that the draft policy had categorised rare disorders amenable to one-time curative treatment such as Hematopoietic Stem Cell Transplantation (HSCT) and disorders that were amenable to organ transplantation into one group, and states that they could be provided with financial support.

It further added that a maximum of ₹15 lakh could be provided to each patient under the umbrella scheme of Rashtriya Arokya Nidhi and that the beneficiaries would not be limited to families below the poverty line. Instead, support would be extended to 40% of population in accordance with the norms of the Pradhan Mantri Jan Arogya Yojana.

‘Deliberate further’

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 the medical needs of those suffering from rare diseases.

The Judges also referred to a research paper titled ‘Rare Diseases in Latin America: Challenges and opportunities for the equitable attention and proposal of patients organisations’ by Angela P. Chaves and Migdalia Denis, and another paper titled ‘Review of 11 national policies for rare diseases in the context of key patient needs’ by Safiyya Dharssi and others.

Apart from these, there were also two judgments of the Delhi High Court on the right to medical care at State cost and the legal obligation of the government to ensure access to life-saving drugs. The Judges insisted that these also be taken note of before finalising the national policy, and granted time till March 2 for the Centre to report back.

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