Governments must ensure timely treatment for rare diseases, recognizing health as a fundamental right, while exploring funding solutions due to high treatment costs.

JUDGMENT

Prathiba M. Singh, J. (Oral)--This hearing has been done by video conferencing.

2. Both these matters concern children, who are suffering from a rare disease known as Duchenne Muscular Dystrophy (hereinafter referred as "DMD"). The drug for this particular condition is stated to be at an experimental stage and is currently being manufactured by a company called Sarepta Therapeutics, USA. The relief sought in these petitions is that the government should be directed to ensure that the Petitioners are provided free treatment for this disorder, as the drug is exorbitantly expensive and is not affordable by the Petitioners.

3. In W.P.(C) 5315/2020, the Union of India through Ministry of Health and Family Welfare has placed on record an affidavit giving details of the various health policies, which are under consideration in respect of such rare diseases. As per the said affidavit, a Draft Health Policy for Rare Diseases has been released by the government in 2020, which is still in the stage of consultation. The earlier policy of 2017 was kept in abeyance by the government vide notification dated 18th December, 2018. This Court, vide order dated 7th August, 2020, had directed the case of the Petitioners to All India Institute of Medical Sciences (hereinafter, "AIIMS"), which has placed on record a report along with an affidavit reiterating the report. The first report filed by AIIMS is to the effect that the child is unlikely to show improvement with Exondys 51 therapy, however, a final recommendation in this regard, is to be taken by the Central Technical Committee for Rare Diseases, Ministry of Health and Family Welfare, Govt. of India. The said report has been followed with another affidavit filed on behalf of AIIMS supporting the said earlier report.

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.

5. In the Draft Health Policy for Rare Diseases 2020, DMD is recognised as being one of the rare diseases, the cost of treatment of which is very high. The said disease has been categorised in group 3 of the Policy, which is extracted hereinbelow:

"Group 3: Diseases for which definitive treatment is available but challenges are to make optimal patient selection for benefit, very high cost and lifelong therapy