NGO urges State to issue special health card for children with long-term illness
The appeal has been made by Sheeba Ameer, founder of Solace, in a recent memorandum to Chief Minister Pinarayi Vijayan, stressing that these children and their families face severe medical, social and financial challenges every day.
'These children need not just palliative care, but sustained medical support to stay alive. Government schemes must focus on treatment and daily medicines, not just symptom relief,' the memorandum states.
Costly medicines
Children with conditions such as cancer, muscular dystrophy, nephrotic syndrome, haemophilia, thalassemia, cardiovascular diseases, epilepsy, Crohn's disease, Down syndrome, autism, renal failure and juvenile diabetes depend on costly medicines, often consumed daily for survival.
The NGO currently spends ₹35 lakh a month on medicines, which covers barely half of the children's needs. 'If we had to meet the entire cost, it would be more than double,' Ms. Ameer pointed out, urging the government to take over this critical support.
The proposed CLI health card would allow families to obtain free or subsidised medicines from all government medical colleges, district hospitals and health centres. While several Central and State schemes exist, 'funds are rarely allocated effectively, and medicines often remain unavailable,' she noted.
The NGO also flagged the acute social and psychological struggles of parents. Many are unable to work due to constant caregiving, leaving families unable to afford rent, food, or even funeral costs if a child dies. 'Some families are pushed to the brink of suicide because of debt and despair,' the note warned.
Special protocols
Adding urgency, the NGO highlighted that during floods and natural disasters, children on immunosuppressive drugs cannot be shifted to regular relief camps, demanding special rehabilitation protocols.
'The government must recognise children with long-term illness as a distinct category and act with urgency,' Ms. Ameer said. 'It is not just about treatment—it is about dignity and survival.'
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