Aurangabad, Feb 4:
The MP, Syed Imtiaz Jaleel, has sought a direct response on the need to provide timely and sustainable support for patients diagnosed with life-threatening 'rare diseases' like Lysosomal Storage Disorders (LSDs) from the union Ministry of Health & Family Welfare (MoHFW) under Rule 377 of the Rules of Procedure and Conduct of Business in the lower house.
The MP stressed that the provision of one-time financial support up to Rs 15 lakh under Rashtriya Arogya Nidhi (RAN) by the Central Government for treatment of Group 3 patients is highly inadequate and of little use to all those patients, especially children, whose life-threatening medical condition requires repeated infusion therapy.
“ In Maharashtra 8 children had lost their lives since the earlier National Policy on Treatment for Rare Diseases 2017 has been kept in abeyance, and the newly revised policy still awaiting finalisation and notification. As guaranteed under Article 21 of the Indian Constitution, the union Government should provide all necessary support to these patients diagnosed with Group 3 disorders,” stated the notice issued under Rule 377 by the MP.
The MP sought response as, despite several requests and petitions filed by patients and their families, the government has shown indifferent attitude towards them and had not granted funds as support for treatment, so far. Earlier, the MP, Imtiaz Jaleel, had written to union Minister of Health & Family Welfare, Dr Harsh Vardhan.