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New Delhi, February 04, 2021 :
In a unique development, an elected Member of Parliament from Maharashtra has sought a direct response on the need to provision timely and sustainable support for patients diagnosed with life-threatening Rare Diseases like Lysosomal Storage Disorders (LSDs). The response from the Union Ministry of Health & Family Welfare has been sought under Rule 377 of the Rules of Procedure and Conduct of Business in the lower house.
Members of Parliament are allowed to raise issues, considered to be of public importance, under this Rule with the consent of the Lok Sabha Speaker. A notice needs to be given before 10 am on the day of the sitting and the text of the notice cannot exceed 250 words.
Member of Parliament from Aurangabad, Syed Imtiaz Jaleel, who had recently written to Dr Harsh Vardhan, Union Health & Family Welfare minister, has now sought a response as to why despite several requests and petitions by patients and their families awaiting funding support for treatment, the Union of India has so far shown an indifferent attitude towards supporting them.
According to Mr Jaleel, the current provision of one-time financial support up to INR 15 lakh under the umbrella scheme of Rashtriya Arogya Nidhi (RAN) by the Union government for treatment of Group 3 patients is highly inadequate and of little use to all those patients, particularly children, whose life-threatening medical condition requires repeated infusion therapy.
“There are increasing cases across several states, including 8 children from Maharashtra alone, who have lost their lives since the earlier National Policy on Treatment for Rare Diseases 2017 has been kept in abeyance, and the new revised policy still awaiting finalisation and notification,” the matter under Rule 377 filed by Mr Jaleel stated, adding, “As guaranteed under Article 21 of the Constitution, it is the Union of India’s obligation to provide all necessary support to these patients diagnosed with Group 3 disorders.”
This development assumes significance following a written communication by the Ministry that the long pending revised policy is likely to be finalised and notified by March 31 this year. The Ministry has, however, expressed its reservation on any financial commitment to provide sustainable treatment support to the patients, already diagnosed and awaiting infusion therapy, and instead stated that the gap can be filled by seeking donations from prospective individuals or corporate donors.
According to members of the patient support groups, who have been fighting for the cause of rare disease patients, the Centre should adopt a multi-pronged approach and make necessary provisions to make a matching grant to those states, in particular, which have already initiated a proof of concept in providing treatment support to patients. Also, priority should be given to ultra-rare diseases like LSDs, for which approved treatments are available in India.
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