Kannur: The Kerala High Court on Tuesday recommended setting up a medical board to study the efficacy of administering one of the world's costliest drugs on a one-and-a-half-year-old Kannur boy suffering from a rare genetic disorder called spinal muscular atrophy.
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.
The Perinthalmanna native moved the court, claiming that he cannot ensure his son's treatment without the support of the state government.
The state government has been asked to suggest names of specialists who will constitute the medical board by Wednesday. The government had informed the court that Arif's son Imran Ahmed could not be administered the drug while on ventilator support. The drug can be administered only if the child can live outside the ventilator for at least 16 hours, the state government informed.
The child has been on ventilator support at the Kozhikode Medical College Hospital for the last three months. Another one-year-old Fathima, daughter of Aboobaker suffering from the same disease is also at the hospital on ventilator support.
The court informed that it will consider the matter on a priority basis on Wednesday.
If the medical board submits a report supporting the treatment, the court will initiate proceedings to arrange funds for the boy's treatment.
Arif had informed the court that the medical drug was the last resort to save his child. The child is likely to lose his life in the current situation, he added.
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 categorized 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 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 treatmentfor 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.
Rs18 crore raised through crowd-funding for toddler
Keralites had come together to raise the funds for another one-and-half-year old child Muhammed suffering from the same disease. There were calls for support to raise Rs 18 crore that is required to purchase Zolgensma, the drug used for the treatment after his sister appealed to the public for support.
Incidentally, 15-year-old Afra, the elder sister of Muhammed, is also affected by the same disease.
On Monday, six days after the crowd-funding initiative was started, the treatment committee informed the public that the entire sum had reached the bank accounts urging people to not deposit any more.
The treatment committee, headed by MLA M Vijin, had a week ago appealed to the public to crowdfund for the treatment of Muhammed.
Medical experts had suggested that the child will have to be administered the dose of the medicine before he reaches the age of two.
(With PTI inputs.)
