Ziya Mehrin could not feel the simple pleasure of “going to bed” in its true sense until recently. The 14-year-old from Balussery in Kozhikode had to rely on pillows to support her back and sleep in a seated position due to a 130-degree forward bend in her spinal cord caused by Spinal Muscular Atrophy (SMA), a rare genetic condition.
But that’s all in the past now. On May 25, she underwent an eight-hour-long scoliosis surgery at the Government Medical College Hospital, Thiruvananthapuram. During the procedure, her vertebrae were straightened, bringing a transformative change to her life.
“I used to get admitted to hospital every two weeks for breathing troubles. Because of that I could not lay on a bed and sleep. After the surgery, I can sleep on the bed. I am not dependent on medicines too,” she told The Hindu.
Mehrin is among the recipients of the Kerala government’s pioneering project - a first-of-its-kind initiative in the country - offering free medical assistance to SMA patients. Under the scheme, 43 children aged up to six have also been given the drug Risdiplam, priced ₹6 lakh per vial, for free since July 2022.
Mehrin’s surgery has also liberated her parents, allowing them to embrace an improved chapter in their lives. “Mehrin’s condition has drastically improved after the surgery. She can now sit in a wheelchair,” said P. Fasna, Mehrin’s mother. SMA is a hereditary rare disorder caused by a mutation in the SMN 1 gene. Movement is not possible for the affected due to lack of muscle strength. Based on genetic makeup, age at the onset of the disease, and other symptoms, it comes in four variants from Type 1 to Type 4.
The free scheme was launched after the Kerala government formed an expert technical committee in 2021, following a Kerala High Court directive. The court had taken note of news reports highlighting the challenges faced by the affected children, the exorbitant cost of medicines, and the lack of sufficient facilities for diagnosis and follow-up treatment.
The committee collected information on patients and examined the available treatment options. As Risdiplam was the only approved drug for sale in India, its use was recommended.
Coordinating various departments, an SMA clinic was set up at the Sree Avittam Thirunal Hospital (SAT), Thiruvananthapuram. Subsequently, information on SMA patients in the State was collected and their clinical examination was conducted under the guidance of specialist doctors at SAT Hospital, and Government Medical College Hospitals at Kottayam and Kozhikode.
As it is important to treat children with SMA at an early stage to prevent further complications and permanent disability, the technical committee recommended priority treatment with Risdiplam for those aged up to six having SMA type 1, 2 and 3.
A total of 212 SMA patients have been called for clinical examination and 43 children have got the medicines so far.
According to K. Razeena, a member of the Cure SMA Foundation, there are at least 190 SMA patients in the State, including her own child. Apart from those being assisted by the government, approximately 60 of them are getting financial help through compassionate medicine schemes of pharmaceutical companies and are also covered under the Employees’ State Insurance Corporation’s scheme. There are still around 90 patients who are not receiving any help. “We also request the government to enhance the age limit for getting treatment under the free scheme and enhance newborn screening at government medical college hospitals,” said Ms. Razeena.
