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Kerala's SMA Children Face Drug Funding Crisis
13 Jan
Summary
- Urgent plea for budgetary support to fund life-saving SMA drugs.
- Over 100 children in Kerala received free SMA drugs for two years.
- Approximately 40 newborns may die if drug distribution is disrupted.
In Kerala, a pressing call has been made for governmental budgetary assistance to ensure the uninterrupted distribution of essential drugs for children afflicted with Spinal Muscular Atrophy (SMA). This rare genetic disorder leads to progressive muscle weakening, with severe forms impacting infants within months of birth. For the past two years, over 100 children in Kerala have received free medications, a program facilitated by direct government negotiations with manufacturers for reduced drug prices.
The state government's recent crowd-funding initiative, Kerala Against Rare Diseases (KARE), aims to raise ₹50 crore annually, but has seen a lukewarm response, proving inadequate given the exorbitant cost of treatment. Foundation representatives highlighted that approximately 40 newborn babies are at risk of succumbing within six months if drug supply is disrupted. This situation underscores the urgent need for sustained financial commitment.
The Cure SMA Foundation India has formally requested the government allocate at least ₹25 crore annually for SMA treatment over the next two years. This funding is crucial to maintain drug availability until more affordable generic options emerge. Additionally, they propose a special lottery-based fundraising initiative. Kerala has also established the first SMA clinic at SAT Hospital and offers free scoliosis correction surgeries for SMA patients.
