'Navaneeth can roll on his back now!' Kerala boy on recovery path after shot of Rs 18-cr drug

Kochi: A Kerala boy who won a Rs 18-crore drug free of cost in a lucky draw is now recovering from a rare genetic disease, nearly four months after been given a shot of it.

“Navaneeth is now improving well after receiving the medicine,” say his parents Santhosh and Anusree referring to the single drug, Zolgensma, worth Rs 18 crore, administered to the two-year-old as part of the treatment for Spinal Muscular Atrophy (SMA).

Navaneeth was fortunate to obtain the extremely expensive drug free of cost, thanks to a lucky draw organised by the overseas drug manufacturer. (Zolgensma is a single dose drug injected for gene therapy.)

Anusree says Navaneeth has shown good progress after getting the medicine. “Earlier, he hardly moved on the bed. But now, he can roll on his back,” she stated.

Even though Navaneeth had received the dose, his total recovery from the genetic disorder was not guaranteed. Still, his life was saved. “But doctors told us to seek treatment at a hospital having ventilator facility even if Navaneeth has a mild fever or cough,” says Santhosh.

Navaneeth was diagnosed with SMA at Amrita Hospital, Kochi, while he was an infant. At that time, doctors suggested physiotherapy as the only treatment. However, they informed Navaneeth’s parents that a drug costing Rs 18 crore was available abroad, but it would be beyond their reach.

The family is from Thiruvananthapuram.

Muhammed's case

Muhammed, a one-and-a-half-year-old boy from Kannur who is suffering from the same condition, too is under treatment in the same hospital. A crowd-funding initiative helped raise the whopping required to buy Zolgensma for his treatment. The update on his condition is awaited.

Navaneeth’s parents say that they are praying for Muhammed’s recovery too.

Lucky draw

The doctors treating Navaneeth came to know that the drug manufacturer was carrying out an access programme under which the medicine was supplied free of cost to children around the world based on a lucky draw. But to be eligible even for the lucky draw, several stringent tests had to be cleared.

Incidentally, Amrita Hospital authorities applied for the access programme for the first time in Navaneeth’s case.

As part of the procedures, the youngster’s blood samples were sent abroad.

After Navaneeth cleared all the tests during September-October last year, the firm informed the Kochi hospital that the boy was included in the lucky draw. However, uncertainty still prevailed as doctors in Kochi had no idea when the lucky draw would be held as it was the manufacturer’s discretion.

Again, fortune favoured Navaneeth as in January 2021, his doctor received an email which said the boy had been selected to receive the Rs 18-crore drug free of cost. “That was the happiest moment in our lives,” say Santhosh and Anusree.

Soon, paperwork to waive an import duty of around Rs 6 crore was completed and Navaneeth was administered the drug on February 26.