People with spinal muscular atrophy demand urgent action from the Centre to reduce medicine costs

People with spinal muscular atrophy demand urgent action from the Centre to reduce medicine costs

Health activists and patients with spinal muscular atrophy (SMA) have refuted the Central government’s affidavit in the Kerala High Court and demanded urgent action to reduce the cost of medicines required for SMA. 

The government’s latest affidavit in the SMA case before the Kerala High Court abdicates its Constitutional obligation to protect right to life and health, they said. The Centre has argued the costs are beyond its financial reach, and instead promotes crowdfunding and State-level interventions.

In the affidavit, the Central government acknowledges the staggering cost of SMA therapies — ranging from ₹50 lakh to ₹8 crore per patient annually, with gene therapies costing between ₹9 crore and ₹30 crore per patient. This results in an unbudgeted national expenditure of ₹6,400 crore to ₹34,000 crore each year. 

Speaking at a press conference organised to highlight the plight of the patients, Saifullah Khalidi, who has been battling the condition, said that instead of shifting the burden to patients and their families, the Union Ministry of Health should look for ways and means to reduce the cost of Risdiplam, a drug required for SMA.

“There is an alternative. The research by Melissa Barber, an expert affiliated with Yale University, reveals that generic Risdiplam could be produced in India for just ₹3,000 per year — a fraction of the current market price,’’ Mr. Khalidi said.

Another contention in the affidavit is that Risdiplam is not efficacious among adults. 

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Chetali Rao, a legal and pharmaceutical expert working on rare diseases, said that SMA impacts individuals differently, depending on the severity of their condition, but is universally marked by progressive muscle weakness and loss of function. Over 8,500 people, ranging from newborns to those over 60 years of age, have received treatment with Risdiplam. 

Data from a trial for Risdiplam has reinforced long-term efficacy and safety profiling in some of the most severely affected people with SMA Type 2 and 3. This trial included people with Type 2 and 3 SMA, including patients with advanced disease. 

SMA activist Poorva Mittal added that the high cost of SMA treatment and medicines was a fact but it did not absolve the government of its moral and constitutional obligations. 

The Working Group on Access to Medicines and Treatments, which organised the press conference, strongly urged the Ministry of Health and Family Welfare to reconsider its position as stated in the affidavit. 

The group in a release said that the government was empowered with effective law and policy tools, and therefore should facilitate the availability of Risdiplam at an affordable price. 

“Section 100 of the Indian Patents Act empowers the government to issue a government-use license to facilitate affordable generic production. It is also a well-known fact that Indian companies possess the ability to produce the generic version of Risdiplam. The Ministry of Health should act swiftly and not push the lives of SMA patients to the edges,” the statement said.