Six-Month-Old Kerala Boy Suffering From Spinal Muscular Atrophy Dies Waiting For Rs 18 Cr Drug
In a tragic incident, a 6-month-old boy from Kerala who was suffering from a rare medical condition called spinal muscular atrophy (SMA) has lost his battle with life.
The boy, Imran Mohammed died on Tuesday night at Kozhikode Medical College in Kerala where he was undergoing treatment for nearly three months.
Imran's parents, Arif and Rameesa Thasni, had been struggling to find treatment for their son.
What is the genetic disorder?
SMA is a genetic disorder characterized by weakness and wasting in muscles used for movement. It is caused by a loss of specialized nerve cells, called motor neurons that control muscle movement.
The only drug that works against this medical condition is ZOLGENSMA, is highly expensive and costs around Rs 16 crore and has to be imported, for which additional import duty and taxes have to be paid, making it cost around Rs 18 crore.
Seeking help from the government
Unable to fund his son's treatment, Arif had recently approached the Kerala High Court 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.
Based on his petition, the HC had set up a medical board of a five-member committee of medical experts to examine him.
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, 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 crowd funding 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.
Crowdfunding that almost met the target
A crowdfunding initiative led by the local MLA had raised over 16 crore for Imran's treatment and was hopeful that the remaining amount could be collected soon.
But before that could happen, little Imran left the world of pains.
