‘Explore crowdfunding to help two children with rare disease’

High Court also directs Centre to give specific timeline on finalisation and notification of the draft health policy

In an uncommon order, the Delhi High Court has ordered the Health Ministry to explore “crowdfunding” to help two children, who are suffering from a rare disease known as Duchenne Muscular Dystrophy, in importing exorbitantly priced medicines.

Justice Prathiba M. Singh 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.

All India Institute of Medical Sciences (AIIMS) had submitted a report that the children are unlikely to show improvement even with the treatment.

Improving chances

Justice Singh, however, said it was “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”.

‘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, Ms. Singh remarked.

The HC also directed the Secretary, Ministry of Health and Family Welfare to give a specific timeline in respect of the finalisation and notification of the Draft Health Policy for Rare Diseases, 2020.

The draft policy has a section where the government proposed crowdfunding for treatment of high-cost rare diseases. The section says that in certain cases since the government cannot fully finance the treatment, the gap can be filled by seeking donations from prospective individuals or corporate donors, who are willing to support the cost of such diseases.

But the draft policy, which was introduced in 2020 for consultation, has still not seen the light of the day. The earlier policy of 2017 was kept in abeyance by the government.

“This court is of the opinion that the finalisation of the Draft Health Policy for Rare Diseases cannot be kept pending indefinitely, especially when common human lives are at stake,” Justice Singh remarked.

The court’s direction came while hearing two different petitions concerning children, who are suffering from Duchenne Muscular Dystrophy, which causes progressive muscle degeneration and weakness in the victim.

The drug for Duchenne Muscular Dystrophy is at an experimental stage and is currently being manufactured by a company in the U.S.

The parents of the two children had sought direction to the government to ensure that their children are provided free treatment for this disorder, as the drug is exorbitantly expensive and is not affordable by them.

The High Court will hear the case again on January 28.