Kerala HC orders setting up of medical board to examine child with rare disease

P K Arif, the father who is an auto-rickshaw driver, moved the court last week seeking free treatment as he has no means to fund it. In his petition, Arif said he has obtained permission to import the medicine for his son from the US but will be unable to pay for it

The Kerala high court on Tuesday asked the state government to set up a medical board to examine a six-month-old baby suffering from spinal muscular atrophy after his father sought support for his son’s costly treatment.

18-month-old Mohammad Rafeeq with his elder sister Afra, who also suffers from spinal muscular atrophy. (HT photo)

P K Arif, the father who is an auto-rickshaw driver, moved the court last week seeking free treatment as he has no means to fund it. In his petition, Arif said he has obtained permission to import the medicine for his son from the US but will be unable to pay for it without the government’s help.

The government informed the court that 102 people in the state suffer from the rare disease and 42 of them have received treatment with support from medical firms under the corporate social responsibility programme. The government cited the National Rare Diseases Policy and added the disease was categorised under Group 3 and the treatment cost for it is very high. The government said it recommends crowd funding for such patients as it was not in a position to extend financial support to them. It pointed out Arif’s son was on ventilator support for three months. The government said the drug can be administered if the child can survive without the ventilator for at least 16 hours. The court then directed the government to set up the board to study the efficacy of administering the costly drug. It said the court will take up the case on a priority basis on Wednesday and if the medical board submits a report favouring the treatment.

₹18 crore were earlier raised in Kerala via a crowd-funding platform for an 18-month child suffering from spinal muscular atrophy in Kannur within a week. After the money exceeded the amount needed for the treatment, P K Rafeeq, the child’s father, said he does not have words to express his gratitude. “Everything is not lost in trying times. It is a symbol of brotherhood and love. I was told the medicine will be most effective if it was administered before the child turns two,” said Rafeeq. His daughter, Afra, also suffers from the disease and moves around in a wheelchair.

Spinal muscular atrophy is a rare genetic disease that affects the central nervous system and muscle movement. It mostly affects children but can develop in adults also. People with the disease lose a specific type of nerve cell in the spinal cord, called motor neurons, that control muscle movement and cripple them.