Thrissur-based NGO, which has been working with children suffering from life-threatening diseases over the past 18 years, has called on the state government to introduce a special health card for “children with long-term illness” (CLI) to ensure continuous access to basic drugs and health care.
The appeal was made by Sheeb Ameer, the founder of Solace, in the recent memorandum to the main minister Pinaray Vijayan, who stressed that these children and their families face serious medical, social and financial challenges every day.
“These children need not only palliative care, but also permanent medical support to remain alive. Government schemes must focus on treatment and daily medicines, not only on the relief of symptoms,” the memorandum says.
Expensive drugs
Children with conditions such as cancer, muscle dystrophy, nephrotic syndrome, haemophilia, thalassemia, cardiovascular disease, epilepsy, Crohn’s disease, Down syndrome, autism, renal failure and juvenile diabetes depend on survival.
NGOs currently spend £ 35 for a month for medicines that barely half the needs of children. “If we had to meet the entire cost, it would be more than double,” Mrs. Ameer stressed, urging the government to take over this critical support.
The proposed CLI Health card would allow families to obtain free or subsidized medicines from all government medical faculties, district hospitals and medical centers. While there are several central and state systems, “funds are rarely assigned effectively and medicines often remain unavailable,” she said.
NGOs also identified acute social and psychological struggles of parents. Many of them are unable to work for constant care, so families cannot afford rent, food or even funeral costs if the child dies. “Some families are pushed on the brink of suicide because of debt and despair,” the note warned.
Special protocols
By adding urgency of the NGO, the NGO emphasized that during floods and natural disasters, children cannot be moved to immunosuppressive drugs to regular relief camps and require special rehabilitation protocols.
“The government must recognize children with long -term illness as a different category and act with urgency,” Mrs. Ameer said. “It’s not just about treatment – it’s about dignity and survival.”
Published – August 19, 2025 20:27
