In India, where healthcare remains a privilege for most, families battling spinal muscular atrophy (SMA) face a heartbreaking struggle against corporate agendas and systemic indifference. SMA is a genetic disorder that progressively weakens muscles and leads to early death without treatment. Life-saving therapies exist, but are prohibitively expensive for the majority of Indians.

The actions of multinational pharmaceutical giants further entrench this inequity. For instance, SMA drug Evrysdi was priced at an astronomical ₹72 lakh annually in India, as compared to ₹12 lakh in China and Pakistan, according to reports last year. 

This pricing disparity reveals little regard for equitable access. When an Indian generic drugs maker attempted to produce a more affordable SMA treatment in 2023, it faced legal action — resulting in a monopoly and inflated prices.

Financial aid

For the innovator, this is about protecting patents. But for patient families, it is a fight for survival, as children risk losing their lives due to delayed access to treatment.

The Indian government needs to step up to remedy this situation. International trade (TRIPS) agreements allow India to issue compulsory licences (CL) for generic versions of patented drugs in health emergencies. SMA qualifies as much, and is waiting for government action.

The National Policy for Rare Diseases (NPRD), introduced in 2021, was intended to provide financial relief to families battling rare conditions, allocating ₹50 lakh per patient. However, with costly treatments like Zolgensma (₹16 crore per dose) and Evrysdi, it is woefully inadequate. The number of patients receiving this support, since inception, is limited. A government crowdfunding initiative has further reduced families to making digital appeals for charity.

Life-saving decisions

The efforts so far, while helping raise awareness, fail to address the systemic issues at the root of the crisis. Despite court directives to streamline fund disbursement, bureaucratic delays force families to confront devastating choices: selling assets, incurring crushing debt, or losing loved ones to preventable deaths.

India’s world-class pharmaceutical industry has the potential to lead in affordable healthcare solutions but appears largely unwilling to challenge monopolies or fund rare disease treatment adequately. The government must invoke CLs to enable affordable alternatives, expand the National Rare Diseases Fund to meet real costs, and eliminate bureaucratic hurdles in accessing care.

Families of SMA patients are not asking for charity — they are demanding justice for patients, to ensure that life-saving drugs are not held hostage to profit-making. It’s time for India to act decisively, proving that every life is precious and must be saved at all costs. No family should be left to fight health battles alone.

(The writer, a spinal muscular atrophy patient, is waiting for access to medication. Views are personal)

More Like This

Published on December 29, 2024