Merely because of the exorbitant price of a drug or treatment, children suffering from a rare disease cannot be deprived of the treatment. This decision was taken by Delhi High Court for the petitioners who were suffering from a rare disease known as “Duchenne Muscular Dystrophy (DMD)”. Delhi High Court gave this judgment in the case of Master Arnesh Shaw and Master Keshav Sharma vs. Union of India [W.P.(C) 5315/2020 & CM APPL.19189/2020 and W.P.(C) 322/2021 & CM APPL.812/2021] by the single bench of Hon’ble Justice Pratibha M. Singh.
In the above-cited case, Natural guardians of the petitioners had approached the court stating that the petitioner children are suffering from a rare disease named Duchenne Muscular Dystrophy(DMD) and they contended that disease is very rare and the treatment/ drugs are only manufactured in the USA company called Sarepta Therapeutics. Being aggrieved by the exorbitantly expensive prices of the drug, petitioners had filed petitions in the High Court seeking directions on the Union of India, Ministry of Health and Family Welfare to ensure that they are given free treatment for the disorder as they cannot afford the heavy prices at which the drug was being sold.
Reading the petitions, the High Court had given orders on 07.08.2020 directing AIIMS to submit a detailed report considering the health conditions of the petitioners. Report submitted by the AIIMS suggested that the child was unlikely to show any improvement with the treatment being given to him with Exondys 51 therapy and it was recommended in the report that the case should be taken by the Central Technical Committee for Rare Diseases, Ministry of Health.
The HC observed that the Right to Health and Healthcare is a fundamental right under Art. 21 of the Constitution and therefore mentioned that even though the treatment is costly, no child of the country will be deprived of it, even if there is a small window of improving their chances of survival or even providing a better quality of life.
HC Bench directed that:-
- A specific timeline shall be created by the Secretary, Ministry of Health and Family Welfare for finalization and notification of Draft Health Policy for rare diseases, 2020.
- The Ministry shall explore the crowdfunding option through prospective individuals, corporate donors, and independent foundations in order to fund the treatment of the petitioners.
- The Ministry shall contact the USA Company, Sarepta Therapeutics which advertises that it provides financial support/medicines to deserving cases.
And Hence, HC opined that “Just because of the exorbitant price of the drug or treatment, patients, especially children, suffering from a rare disease ought not to be deprived of treatment for their condition” and it was directed that the Union of India shall implement and notify the draft policy and also consider crowdfunding option in the meantime for the successful treatment of the petitioners.
HC directed that the Ministry of Health and Family Welfare should finalize the implementation of the Draft Health Policy for Rare Diseases, 2020 at the earliest.
