SMA patients in Kerala seek budgetary support for free drug scheme

A demand has been made to provide budgetary support to distribute life-saving drugs for free to children affected by Spinal Muscular Atrophy (SMA), a rare genetic disorder that leads to progressive weakening of the muscles, in Kerala.

Based on the age of onset and severity of symptoms, five types of the disease are generally identified. The most severe and common form is Type 1 SMA, whose symptoms appear from the age of six months. If the symptoms appear between the ages of six months and two years, they are classified in the Type 2 SMA category. These children die within 12-14 months of their birth if they don’t get the medicine on time. However, the treatment is highly expensive.

According to the functionaries of the Cure SMA Foundation India, a public charitable trust, over 100 children in Kerala have been getting free drugs for the past two years after the government directly negotiated with the manufacturing companies to procure drugs at lower prices. Those aged below five have been receiving the drugs since 2022, and children below 12 were included in the scheme in 2024.

The State government also launched a crowd-funding initiative recently under the Kerala Against Rare Diseases (KARE) project of the Health department to collect at least ₹50 crore a year from non-governmental organisations and corporates. However, the foundation’s functionaries claim that the response from society has been lukewarm so far. The current flow of funds is not adequate considering the exorbitant cost of drugs and the treatment, they say. In a letter to Finance Minister K.N. Balagopal, K. Razeena, Director (Patient Empowerment), Cure SMA Foundation India, says that around 40 newborn babies could die in another six months if there is a disruption in the distribution of the life-saving drugs.

The foundation has demanded that the government set aside at least ₹25 crore a year in the Budget for two years for SMA treatment. This will ensure continuation of treatment and availability of drugs until effective and safe generic drugs are available in the market. Also, a special fund-raising initiative on the lines of the Karnuya Lottery could be launched too. The government had set up the first SMA clinic in Kerala at the SAT Hospital, Thiruvananthapuram. Free surgery to correct scoliosis of the spine in SMA patients was also initiated at the Government Medical College Hospital in the State capital.