PETITION-1: Master Arnesh Shaw v. Union of India & Anr.
CITATION: W.P.(C) 5315/2020 & CM APPL.19189/2020
PETITION-2: Keshav Sharma v. Union of India & Anr.
CITATION: W.P.(C) 322/2021 & CM APPL.812/2021
CORAM: Justice Pratibha M. Singh
A single judge bench of Delhi High Court held that merely due to the exorbitant prices of treatment or a drug, children that suffer from a rare disease cannot be deprived of treatment. Two petitions were filed in the court to seek directions on the Union of India for the treatment of children who are suffering from DMD (Duchenne Muscular Dystrophy) a rare disease.
The petitions were filed by the natural guardians of two children who suffer from the disease. They contended that the drug for the treatment is presently in the experimental stage in India and is produced by Sarepta Therapeutics (USA Company).
The court gave a common judgement for the two petitions issuing directions on Ministry of Heath and Family Welfare to finalize the implementation of Draft Health Policy for Rare Diseases, 2020. The petitioners stated that the treatment expense is very high and the disease falls within the ambit of the draft policy therefore the government should provide free treatment.
OBSERVATION OF THE COURT
The court observed 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.” The court also stated that Right to Healthcare falls under Article 21 of the Constitution of India. The authorities have to consider even a small chance in survival and improvement of the condition of children, it has to be ensured that their life is not compromised.
DIRECTION OF THE COURT
The court directed the Union of India:
- A timeline has to be created by the Secretary of Ministry of Health and Family Welfare to finalize and notify the Draft Policy of 2020.
- The Ministry will also consider the option of crowd funding.
- The Ministry shall contact Sarepta Therapeutics (USA Company) as it advertises that it provides financial support in deserving cases.
- The Ministry has to come up with a proposal within 10 days.
The next hearing of the matter was decided to be January 28, 2021.