Now, hope for kids with crippling muscular condition

Cost A Major Concern For Parents

- Malathy Iyer

Mumbai: On Wednesday, Mahim resident Zeba Gufran was ecstatic as without her spending a rupee, her four-year-old son became the first in Mumbai to get started on a spinal injection treatment costing around Rs 5 crore in the first year.

Her son, Affan Farooquie, suffers from spinal muscular atrophy (SMA), which is a crippling neuromuscular condition that affects one in every 8,000 children.

In the last four years, the hitherto untreatable condition has got three distinct options. While Farooquie’s spinal injection treatment (Spinraza) cost will become Rs 3.2 crore from the second year, a one-time gene therapy shot (Zolgensma) costs Rs 16 crore. A daily syrup (Evrysdi) is available in the country since July at a cost of Rs 72 lakh in the first year and Rs 56 lakh thereafter. A lung or liver transplant would, in contrast, work out to Rs 25 lakh to Rs 30 lakh or cutting-edge cancer immunotherapy about Rs 2 lakh a month.

Gufran, whose husband works in Egypt, says she cannot fund her son’s treatment. It has been possible through a compassionate use programme started at BMC-run Nair Hospital, Mumbai Central, along with the manufacturer Biogen. “My younger son, who is 3years-old, has been on the daily syrup for 10 months through Roche’s compassionate use programme,” she said.