Allahabad High Court asks Centre to fund treatment of 3 children with rare disorder

Noting that the estimated cost of the treatment was Rs 72 lakh, the high court highlighted the difficulties faced by people who can’t afford expensive medical treatment and directed the Centre to take appropriate steps.

The Allahabad High Court has directed the Centre to consider providing financial assistance for the treatment of three children with a rare genetic disorder, while ordering their admission at Sanjay Gandhi Postgraduate Institute of Medical Sciences (SGPGI), Lucknow, for further medical evaluation. The treatment is expected to cost around Rs 72 lakh per year.

A bench of Justices Alok Mathur and Amitabh Kumar Rai passed the directions on September 15 while hearing a petition filed on behalf of three children diagnosed with Mucopolysaccharidosis Type-I (MPS-I) – Hurler-Scheie Phenotype or Hurler–Scheie Syndrome.

The bench observed that the financial burden of treating such diseases could be “so exorbitant as to be beyond the reach of ordinary citizens” and said the state should extend financial and medical assistance to them.

“The State is duty-bound to protect and look after the interests of every citizen, irrespective of his financial or hierarchical status in society. Accordingly, it is expected that the State should also formulate such policies, the benefits of which may be secured by the poor and needy,” the order read.

Justices Alok Mathur and Amitabh Kumar Rai directed the Centre to pass appropriate orders regarding financial assistance within 10 days.

Hurler–Scheie Syndrome is a rare genetic disorder caused by the body’s inability to produce an enzyme that breaks down complex sugars. It causes progressive joint stiffness, making fine-motor skills increasingly difficult in day-to-day life.

The high court noted that the treatment for the rare disorder had earlier been estimated to cost around Rs 72 lakh every year, an amount beyond the financial means of the children’s father. The petition was filed to secure their treatment.

The court had earlier passed orders seeking responses from various authorities, including the state authorities as well as the manufacturers of the drugs prescribed for the treatment, in a bid to prevent them from succumbing to the fatal rare illness. Following the efforts, the state government and SGPGI released a certain amount.

The bench noted that as per the National Policy for Rare Diseases (NPRD) 2021, the Centre can consider the petitioners’ request for financial aid for their treatment subject to a recommendation by the rare diseases committee.

The High Court directed that once the children were admitted to the hospital, SGPGI would carry out the tests and the treatment they were required to undergo in the normal course. “Simultaneously, in terms of the affidavit filed by the Union of India, a demand shall be sent to the following email IDs:….The said demand shall be made within 24 hours of the admission of the petitioners in the SGPGI,” the ruling added.

The children were also directed to remain as in-house patients until necessary steps were taken by the Centre on the demand raised by the SGPGI. The court continued, “It is further clarified that the SGPGI shall, at its discretion, deduct an appropriate amount from the funds released by the Union of India in favour of the petitioners towards the period during which they have remained as in-house patients.”

The court directed the Centre to consider the demand and pass appropriate orders regarding financial assistance within a maximum of 10 days of receiving it. The bench said it expected the Centre to “sympathetically consider” the children’s circumstances and take a time-bound decision.

The matter will next be heard on September 30, when the Union government and SGPGI are required to file compliance affidavits.

The bench also used the case to highlight the difficulties faced by people with rare disorders, particularly those unable to afford expensive treatment, saying that the state is duty-bound to protect and look after the interests of every citizen, irrespective of their financial or hierarchical status in society.

The court said the state should formulate policies whose benefits could be accessed by poor and needy patients and directed that such schemes should be communicated to specialised hospitals as well as government and private hospitals.