The court affirmed that the right to health, as part of the fundamental right to life under Article 21, requires timely access to treatment, especially for children with rare diseases.

Headnote:(A) Constitution of India - Article 21 - Right to Health - The court held that children suffering from rare diseases should not be deprived of treatment due to exorbitant costs, emphasizing that the right to health is a fundamental right under Article 21. The draft National Policy for Rare Diseases by the government was noted to be crucial but delayed. (Paras 5, 12, 15, 21)

(B) Directions for Government - The court directed the Union of India to finalize the National Policy for Rare Diseases by a specified timeline and establish a Rare Diseases Fund to ensure proper treatment availability and funding mechanisms (Paras 21, 23).

(C) Health Budget Accountability - The court addressed the inefficient use of allocated health budgets for rare diseases and mandated its effective utilization for treatment and research (Paras 18, 19).

Facts of the case:
Petitioners, mostly children, suffered from rare diseases, including Duchenne Muscular Dystrophy, and sought free treatment from the Union of India due to exorbitant costs of medicines (Paras 1, 2).

Findings of Court:
The court recognized the urgent need for indigenous development of therapies for rare diseases and a structured funding mechanism to address healthcare costs (Paras 16, 21).

Issues: The core issue involved ensuring timely treatment for children suffering from rare diseases amidst high medical costs and the delay in finalizing a government policy to address the same (Paras 5, 8).

Ratio Decidendi: The right to health under Article 21 includes timely access to necessary medical treatment, and governmental inaction undermines this fundamental right (Paras 5, 21).

Result: The court directed the completion of the National Policy for Rare Diseases by a set deadline and mandated the establishment of a Rare Diseases Fund.

Table of Content
1. identification of petitioners suffering rare diseases. (Para 1)
2. petitioners seek free treatment for rare diseases. (Para 2)
3. government policies and consultations on rare diseases. (Para 3 , 4)
4. court emphasizes right to health and urgent policy finalization. (Para 5 , 6)
5. clinical trials and expert committee proposed for rare diseases. (Para 10 , 11)
6. expert committee report highlights need for indigenization and funding. (Para 12 , 13)
7. budget allocations and expenditures for rare diseases. (Para 14 , 18)
8. importance of r&d and creation of a permanent fund. (Para 15 , 16 , 17)
9. court's directives on policy finalization and patient assistance. (Para 19 , 21 , 22)
10. court directs further processing of treatments for petitioners. (Para 23 , 24 , 25 , 26 , 27)

JUDGMENT

Prathiba M. Singh (Oral)--The Petitioners in these cases, who are mostly children, are suffering from the following Rare Diseases:

Rare Diseases	Petitioners	Age	Writ Petition Number
Duchenne Muscular Dystrophy (hereinafter, "DMD")	1) Master Arnesh Shaw	7 years	WP(C) 5315/2020
	2) Master Aviraj Garg	4 years	WP(C) 10782/2020
	3) Master Harshit Soni	16 years	WP(C) 3682/2021
	4) Master Dhananjay Bharadwaj	11 years	WP(C) 3689/2021
	5) Master Khushwant Bhardwaj	7 years	WP(C) 3706/2021
	6) Master Aarav Garg	5 years	WP(C) 3707/2021
	7) Master Manish	8 years	WP(C) 3729/2021
	8) Master Chirag	6 years	WP(C) 3729/2021
	9) Master Shourya Maru	7 years	WP(C) 3737/2021
	10) Master Keshav Sharma	12 years	WP(C) 322/2021
	11) Master Lakshya Kumar Goyal	8 years	WP(C) 1611/2021
	12) Master Siddharth Swarnkar	9 years	WP(C) 3859/2021
MPS II (Hunter Syndrome)	1) Master Medhansh Jhawar	2 years	WP(C) 1491/2021
	2) Master Kenit Jhawar	3 years	WP(C) 1511/2021
Hippel-Linau	1) Payel Bhattacharya	41 years	WP(C) 3662/2021

2. It is the case of the Petitioners that the medicines and therapies for all these Rare Diseases are exorbitantly expensive, and directions ought to be issued to the Respondents i.e., the Union of India and its Ministry of Health and Family Welfare, All India Institute of Medical Science (hereinafter, "AIIMS"), as well as the GNCTD, to provide continuous and uninterrupted treatment to the Petitioners, free of cost.

3. On 17th August, 2020, notice was issued in WP(C) 5315/2020, to the Respondent-Union of India, and a counter affidavit had initially been called for from the Union of India. An affidavit was placed on record in W.P.(C) 5315/2020 stating that various health policies are under consideration by the Union of India, in respect of such Rare Diseases. As per the said affidavit, a Draft National Policy for Rare Diseases has been released by the Government in 2020, which was in the stage of consultation. The said draft policy of 2020 was preceded by an earlier policy of 2017 which was kept in abeyance vide notification dated 18th December, 2018.

4. On 12th January, 2021, this Court had observed that the various Rare Diseases have been grouped by the Union of India, in their Draft National Policy for Rare Diseases, as Group 1, 2 and 3. Further, the draft policy also prescribed the manner in which each of the said diseases was to be dealt with.

5. This Court after considering the matter observed as under:

"..4. This Court is of the opinion 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 draft policy of the government, which was introduced in 2020 for consultation, has still not seen the light of the day. Considering the fact that `Right to Health and Healthcare is a Fundamental Right which has been recognised by the Supreme Court to be a part of the `Right to life' under Article 21 of the Constitution, it is incumbent on society in general and authorities in particular to ensure that the life of such children is not compromised, even if there is a small window of improving their chances of survival or even providing a better quality of life.

...

8. This court

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The court affirmed that the right to health, as part of the fundamental right to life under Article 21, requires timely access to treatment, especially for children with rare diseases.

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