Haemophilia patients are dismayed by the decision of the Union Finance Ministry to withdraw exemption of customs duty of life-saving medicines for them, the Haemophilia Federation of India (HFI) has said. The HFI says the decision will affect the lives of haemophiliacs, who are already struggling to meet treatment expenses. http://www.thehindu.com/news/national/kerala/a-body-blow-for-haemophiliacs/article8205177.ece Haemophilia is a life-long genetic disorder that prevents clotting of blood. People with this disorder do not have enough of a particular clotting factor in the blood. The bleeding is managed by injecting the missing clotting factor - the anti-haemophilia factor (AHF). E. Raghunandanan, chairman, Southern India Regional Council, HFI, urged the government to revoke the decision immediately. “An adult haemophilia patient requires 2,000-3,000 units of AHF to treat one bleeding episode. The annual treatment cost of a patient who suffers frequent bleeding episodes may reach more than Rs.1.5 lakh. Cutting of customs duty exemption will escalate the cost,” he said.
There are more than 10,000 haemophilia patients in the State. The disorder affects mostly men. It is linked to a defect in the X chromosome. Women are generally carriers of the disease. A survey showed that more than 70 per cent of the haemophiliacs are disabled, owing to lack of timely treatment. “Even one haemophilia patient will push even a fairly rich family to debt. Many face social discrimination,”he said. A delegation of the HFI will approach the government to demand withdrawal of the decision, he added. -- Avinash Shahi Doctoral student at Centre for Law and Governance JNU Register at the dedicated AccessIndia list for discussing accessibility of mobile phones / Tabs on: http://mail.accessindia.org.in/mailman/listinfo/mobile.accessindia_accessindia.org.in Search for old postings at: http://www.mail-archive.com/accessindia@accessindia.org.in/ To unsubscribe send a message to accessindia-requ...@accessindia.org.in with the subject unsubscribe. To change your subscription to digest mode or make any other changes, please visit the list home page at http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in Disclaimer: 1. Contents of the mails, factual, or otherwise, reflect the thinking of the person sending the mail and AI in no way relates itself to its veracity; 2. AI cannot be held liable for any commission/omission based on the mails sent through this mailing list..
