Jaipur, March 16 Announcing the verdict on a petition filed by patients suffering from rare diseases, the Rajasthan High Court has directed the state government to ensure that the patients suffering from such diseases are treated at J.K. Lon Hospital in Jaipur.
The court mentioned the recent case of one Zamil, and directed the state government to treat the petitioners for a rare disease Spinal Muscular Atrophy, at J.K. Lon Hospital.
Justice Inderjeet Singh in his order passed on March 13 quoted a verdict announced on December 6, 2022 in the matter of Zamil vs. state government.
In Zamil's case, the court had said: "Since the matter involves issues relating to treatment of patients suffering from rare diseases, the state government is also required to ensure availability of funds for treatment including procurement. We give liberty to individual cases of those persons who are suffering from rare diseases to approach the court in case there is grievance that they are not getting proper treatment either in AIIMS at Jodhpur or in JK Lon Hospital at Jaipur. The petition is disposed of at this stage."
Recalling the same judgement, the court said that the writ petition is disposed of in view of the judgment passed by the Division Bench of this court in the matter of Zamil (supra) with a direction to the respondents to treat the petitioners for their rare disease i.e. Spinal Muscular Atrophy (Antisense oligonucleotides both intravenous & oral & gene therapy) at J.K. Lon Hospital.
It needs to be mentioned here that the parents of children suffering from rare disorders have been running from pillar to post seeking medical help in the state but nothing concrete has been done so far.
Spinal Muscular Atrophy can be cured with "Rs 16 crore shot", say doctors.
One of the petitioners, Tanishq Singh's parents, are crying for help as they are poor and hail from a small village.
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