HC expands rare disease treatment under CM scheme
JODHPUR, Dec. 1 -- The Rajasthan high court, while giving relief to patients of muscular dystrophy and other rare diseases, directed that the benefits of the Mukhyamantri Ayushman Bal Sambal Yojana, 2024 be extended to patients of all ages till further orders. Its benefits are currently available only to patients below 18 years of age.
Senior Advocate Dr. Sachin Acharya, on behalf of the Swavalamban Foundation, raised the issue of lack of diagnosis, treatment and rehabilitation support for patients of muscular dystrophy in Rajasthan before the division bench of justices Pushpendra Singh Bhati and Anuroop Singhi on Friday. He said patients are being referred to private labs for testing, which charge significant sums of money.
He added that only AIIMS in Rajasthan has a Centre of Excellence, making it difficult for patients from remote areas of Rajasthan to travel for treatment. Acharya said that even under the CM's Ayushman Bal Sambal Scheme, only 63 listed rare diseases are covered, and there is no provision for treatment of other rare diseases such as GNE Myopathy, Becker MD and Limb Girdle MD. He added the worrying aspect is that the CM Ayushman Bal Sambal Scheme only provides treatment for patients under 18 years of age.
During the hearing, additional advocate general NS Rajpurohit, appearing for the State, said this is a progressive disease and after 18 years, the chances of survival are minimal as per the opinion of experts; therefore, the policy is restricted to patients up to 18 years of age.
"This court is extremely concerned and anxious about the issue at hand. While dealing with it in detail, today we restrict ourselves to directing that until further orders, Condition-I of Clause 5 of the Mukhyamantri Ayushman Bal Sambal Yojana, 2024 shall be read as applicable to all citizens/patients of all ages instead of being restricted to persons below 18 years of age. Thus, the benefits of the policy shall extend to all persons requiring such treatment with the same kind of assistance as is provided to persons below 18 years."
The Additional Advocate General requested time to respond to the remaining issues raised by the petitioner, such as infrastructure, rehabilitation and policy deficiencies. The court accepted and scheduled the next hearing for December 16....
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