Kerala to give Risdiplam free to spinal muscular atrophy patients in every district

Risdiplam, a drug used to treat spinal muscular atrophy (SMA), will be made available free of cost to patients in all of Kerala’s districts, The Hindu reported on 7 November.

SMA is a rare genetic disease that destroys the nerve cells controlling muscles. Children with the most severe forms lose the ability to sit, swallow or breathe on their own, and many do not survive early childhood without treatment. Risdiplam, taken by mouth every day, helps the body make a protein that the nerve cells need, and can slow or halt the disease. At market prices it costs several lakh rupees a month, far beyond what most families can pay.

The background

Kerala supplies the drug free under its programme for rare diseases. In February, the State extended free supply to patients up to 25 years old, from 12 earlier, with ₹30 crore set aside in the Budget, and said it expected about 80% of SMA patients identified in the State to benefit.

Elsewhere in India, families of children with SMA have often turned to crowdfunding to pay for treatment, including for a one-time gene therapy that costs about ₹16 crore.

What families should do

Patients diagnosed with SMA through genetic testing can enrol through the government medical college hospitals and the State’s rare-disease programme. Families should ask at their district hospital how supply will work in their district.