HC to set up med board to examine infant suffering from SMA, needing Rs 18cr medicine

A day after Rs 18 crore was raised in Kerala through online crowdfunding to save the life of an 18- month old child with spinal muscular atrophy, the High Court on Tuesday decided to set up a medical board to examine another six-month-old infant suffering from the same ailment and is seeking free treatment.

Justice P B Suresh Kumar said the five-member committee of medical experts would be constituted on Wednesday, the lawyer representing the infant's father told PTI.

The infant's father, who is an autorickshaw driver, has moved the high court, seeking free treatment for his son as the same costs around Rs 18 crore and he has no means to raise that kind of money. In his petition, filed through advocate P Chandrasekhar, the father - Arif - has said that while he obtained permission for importing the required medicine - Zolgensma Onasemnogene injection - he cannot afford to buy even one dose as the same costs Rs 18 crore. He moved the court, claiming that he cannot ensure his son's treatment without the support of the state government.

The government, in a statement filed in court, has said that neither the Health Department nor the Kerala Social Security Mission (KSSM) was in a position to extend financial support for bearing the huge cost of the treatment/medicine required by Arif's son, who has been admitted in the Kozhikode Medical College Hospital and is on ventilator support. The government has also said that according to the National Rare Disease Policy,2021 of the Union Health Ministry Ministry, Spinal Muscular Atrophy (SMA) is categorised in Group 3, for which the cost of treatment is very high, and it recommends a digital crowdfunding platform be leveraged for mobilizing the necessary funds. It further said that there are around 102 patients in the state suffering from SMA, a rare genetic disorder, of whom 42 have received the treatment under the compassionate use program extended by pharmaceutical companies.

The state also said that the funds it has, including those under the We Care scheme, are not even sufficient to meet the needs of various health schemes of the KSSM, which provides assistance to the elderly, cancer patients below 18 years of age, and minors requiring emergency treatment for various other ailments like heart disease. "In these circumstances, it is humbly submitted that the Health department and KSSM is not in a position to extend financial support for bearing the huge expenditure of SMA," the state said in its statement and sought dismissal of the petition