Rustom Irani, a 45-year-old screenwriter from Andheri, has spent his life racing against time. Diagnosed with type 2 spinal muscular atrophy (SMA) at the age of 13—though symptoms appeared earlier—he has watched his muscles weaken with each passing year.
“Every few months, our patient support groups receive news of a child’s death due to disease progression,” Irani shares grimly.
Life-Saving Treatment Remains Elusive
For Irani and over 1,000 SMA patients across India—around 200 of whom live in Mumbai—lifesaving drugs remain financially out of reach. These medications cost crores of rupees. However, a recent court ruling has sparked hope.
Last month, the Delhi High Court allowed Natco Pharma to market a generic version of risdiplam, a drug developed by US-based Roche. While Roche sells the drug for ₹6.2 lakh per bottle, Natco has proposed a drastically reduced price of ₹15,900. One bottle lasts for about a month.
Legal Uncertainty Clouds Progress
Despite the breakthrough, the legal battle continues. Roche has appealed the decision, and a division bench is now reviewing the case. The uncertainty has left patients in limbo.
“For patients like us, time is literally life or death,” says Karan Shah, a 31-year-old dog trainer from Dadar who was diagnosed with SMA at 17. Shah, who lost his older brother to the disease, has never accessed any SMA medication.
Living Without Medication
Irani and Shah rely on physiotherapy and other supportive care measures, as fundraising efforts for adult patients often fail.
“In the absence of drugs, supportive care becomes critical,” notes a doctor from KEM Hospital’s Centre of Excellence for Rare Diseases. The Centre also helps patients access a one-time government grant of ₹50 lakh for rare diseases.
Struggles of a Young Mother
As reported by TOI, Kirti Singh from Badlapur has been trying to obtain this aid since 2023, when her two-year-old daughter was diagnosed with SMA.
“We’re told the hospital is still waiting for government funds,” she says. Singh was fortunate to receive a six-month dose from Roche’s sampling programme. Since then, she has depended on crowdfunding to purchase further medication. But those funds are drying up fast.
Generic Drug Could Prevent Further Decline
Paediatric neurologist Dr Neelu Desai from PD Hinduja Hospital supports the generic version’s release.
“The condition can’t be reversed, but the drug can stop it from worsening,” she explains. In 2021, Dr Desai helped administer gene therapy to 13 infants—a one-time dose priced at ₹8–14 crore. Ten survived and are progressing well; the remaining three received treatment too late.
What Lies Ahead
According to K M Gopakumar, a senior researcher at Third World Network, the case’s outcome hinges on the division bench.
“If the court upholds the earlier ruling, Natco can market the generic version even if Roche moves the Supreme Court,” he explains. “But if Roche wins the appeal, the legal process could drag on indefinitely.”