The 2,000-odd haemophilia patients in Kerala are in dire straits as there is acute shortage of anti-haemophilia factor in the State.
Haemophilia is a genetic disorder that prevents clotting of blood. People with the disorder will not have sufficient clotting factor in their blood to arrest bleeding in case of injuries. The bleeding is managed by injecting the missing clotting factor, the anti-hemophila factor (AHF), to the patients. In a majority of the patients, there will be deficiency of Clotting Factor 8 or 9.
“Haemophilia patients have been getting anti-haemophilia factor through the Karunaya Benevolent Scheme for the past eight years. But there is acute shortage of the AHF in Karunya pharmacies across the State now,” said E. Raghunandanan, national executive member of the Haemophilia Federation of India.
“We came to know that the two companies, Baxter and Novo Nordisk, which used to supply the factor to the Karunya pharmacies, stopped the supply as they had yet to get huge arrears from the government,” he said.
Desperate calls
“We are getting desperate calls from patients and their families from across the State. Haemophilia patients cannot survive without the clotting factor,” Mr. Raghunandanan added.
An adult haemophilic patient needs around 3,000 units of AHF to arrest a single bleeding episode.
Thus, the annual treatment cost of a patient with frequent bleeding episodes will reach more than ₹1.5 lakh, which cannot be afforded by a majority of the families.
Even a rich family will be pushed to debt traps with the cost of treatment.
“These families depend solely on the supply of AHF from Karunya pharmacies. If they stop the supply, many of them will bleed to death. A survey showed that more than 70% of the haemophilia patients are disabled as they did not get timely treatment. When the existing patients are not getting the AHF, new patients are denied registration in the Karunya scheme,” Mr. Raghunandanan said.
Moreover, haemophilia patients in the State are in a rude shock over the news that the government is going to stop the Karunaya scheme by March.
Thousands of patients urge the government to continue the scheme, their only hope for survival.
“The government should include haemophilia care in the State Budget, like the Puducherry and Tamil Nadu governments. The registered patients in Puducherry and Tamil Nadu get AHF from district and taluk hospitals and medical colleges. The State government should also bring haemophilia under the National Health Mission. Under the mission, the Centre will take care of 60% of the total expense,” Mr. Raghunandanan, who is also secretary of the Haemophilia Society, Kunnamkulam chapter, said.
