Delhi High Court directs AIIMS to treat toddler suffering from rare disease 'Gaucher'

Delhi HC has directed the All India Institute of Medical Sciences (AIIMS) to treat an 18-month-old girl suffering from a rare disease called Gaucher. The parents of Alisha Khan, the toddler suffering from the genetic disorder, had approached the Delhi HC seeking funds for her treatment as well as directions for treatment to be given to her as repeated representations to various governmental authorities hadn't been fruitful.

While directing All India Institute of Medical Sciences (AIIMS), Justice Pratibha M Singh also directed the Union of India to file an affidavit before the next date of hearing as to the current policy of the Govt on rare diseases. The next date of hearing in the matter has been set as Apr 17.

Court also noted that, though the Central govt had come out with a National Policy for Treatment of Rare Diseases, in 2018, due to objections by certain state govts, the same was reportedly scrapped & a draft policy document for rare diseases was released on January 13 this year. However, the same hasn't yet come into effect. Owing to this, there appears to be no policy in place at this point for dealing with persons with rare diseases & how the treatment is to be provided to them. It is pleaded that Gaucher has been treated as an "orphan disease" in the US & in the European Union.

The father has submitted in the petition that the monthly cost of treatment is approximately Rs 3.5 lakhs, which is quite steep, & therefore the family said that it can't afford. After noting all the submissions made by the counsels, the court stated that "considering the age of the child & given that the policy for rare diseases is yet to be finalised by the Govt, it is deemed appropriate to direct All India Institute of Medical Sciences (AIIMS) to start the treatment of the petitioner without charging anything from the Petitioner."

Further directions in respect of the expenses towards the said treatment would be passed after the Union of India enters appearance in the matter.

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