The Delhi High Court on Monday sought the response of the Centre and the Delhi government on a petition filed by two persons suffering from muscular dystrophy, seeking directions that they be provided all life-saving treatment since they are suffering from the condition.
A single-judge bench of Justice Pratibha M. Singh directed the Principal Secretary, Health, Government of NCT of Delhi, to constitute a medical team within 5 days and send it to the residence of the petitioners to assess their need. It asked the medical team to submit a report to the High Court before the next date of hearing on January 28, 2021.
Appearing for the petitioners Advocate Ashok Agarwal and Advocate Kumar Utkarsh argued, “These patients are immobile, condition rapidly deteriorating and need government assistance apart from treatment.”
The Delhi High Court was hearing the petition filed by muscular dystrophy patients’ siblings 29-year-old Rosalini Parida and 26-year-old Rakesh Kumar Parida, seeking directions to the Delhi government’s Health and Family Welfare Department and the Union Ministry of Health and Family Welfare to provide all life-saving and quality of life providing relief for the petitioners.
They also submitted that the impugned inaction of respondents to not help the petitioners is in violation of fundamental and human right to life of the petitioners suffering from progressively worsening life-threatening disability guaranteed to them under Articles 14, 21, 38, 39, 41 and 47 of the Constitution of India read with provisions of the Rights of Persons with Disabilities Act, 2016.
“It is submitted that the amount which was provided under disability pension provided to petitioner could not cover the expenses of medical and nutritional needs,” the petition said.
The petitioners submitted that they are suffering from seriousness of their progressively worsening muscular dystrophy, which is of 30 types and some of them have various sub-types. “Muscular dystrophy affects all the muscles in the body and all the vital organs like heart and lungs predominantly and further it affects entire physiological systems in the body. Health condition of persons with muscular dystrophy worsen rapidly without regular treatment, energy supplements, food therapy and medicines. Very urgent need for treatment for petitioners with muscular dystrophy so as to retain the body condition so that newly developed gene therapy/drug therapy/stem cell therapy if any in future will work,” stated the plea.
The petitioners have sought the following directions;
i) issue any appropriate writ, order or direction, directing the respondents to forthwith constitute medical team and send it to the residence of the petitioner and make assessment of need of high support to the petitioners and submit it report to this Hon’ble Court for passing appropriate directions;
ii) issue any appropriate writ, order or direction, directing the respondents to forthwith arrange for petitioners free of cost Physiotherapy, Occupational therapy, Hydro therapy at door step or in any another appropriate place by providing free transport facility;
iii) issue any appropriate writ, order or direction, directing the respondents to forthwith provide petitioners free of cost the required energy supplements, medicines, food therapy with necessary nutrients, periodic holistic health intervention, proper accurate diagnosis;
iv) issue any appropriate writ, order or direction, directing the respondents to forthwith provide petitioners free of cost Walker, Caliper, Taylor belt, AFO, KFO Outlook, Bionic Knee brace, spinal brace, Biodex Unweighing System with periodic maintenance and ventilation machine;
v) issue any appropriate writ, order or direction, directing the respondents to make sure petitioners have free access to gene therapy or any other new treatments once it is made available;
vi) issue any appropriate writ, order or direction, directing the respondents to provide to petitioner free of cost Care Givers to take care of them and also to provide free reasonable accommodation in ground floor with full accessibility facilities in terms of the provisions of the Rights of Persons with Disabilities Act, 2016; and
vii) pass any other, order or direction or such further orders as may be deemed just and appropriate, in the facts and circumstances of the case and also in the interest of justice, in favour of the petitioners.
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