Lack of sufficient support from the government and unaffordable price
of the life-saving medicines still haunt the haemophilia patients.
The regional council meeting of Haemophilia Federation held here on Sunday urged the government to provide sufficient support for the patients suffering from haemophilia, a life-long genetic disorder that prevents clotting of blood.
Clotting factor
People with this disorder will not have enough of a particular clotting factor in their blood.
The disorder is managed by injecting the missing clotting factor (anti-haemophilia factor). Addressing the meeting, Dr. Abraham Koshi, Director Research & Hepatology, Lakeshore Hospital, Kochi, said the haemophilia patients, who cannot afford treatment of Hepatitis C, could avail themselves of free treatment now.
The haemophilia patients become vulnerable to the Hepatitis A, B, and C, when they depend on blood particles, instead of anti-haemophilia factor (AHF) for arresting the bleeding.
“Unavailability and the high cost of AHF prompt them to go for the blood particles. If not careful, there are chances of transmission of diseases like Hepatitis A, B, and C, and HIV during transmission of blood particles,” said Dr. Koshy.
He said now effective medicines were available for Hepatitis C and it could be cured with treatment of just three months, he said.
An adult haemophiliac requires 2,000-3,000 units of AHF to treat one bleeding episode. Thus, the annual treatment cost will exceed Rs.1.5 lakh for a patient with frequent bleeding.
Statistics shows that there are more than 10,000 haemophilia patients in the State. Men are mostly affected by the disorder, as the women usually are carriers.
“Our demand to set up haemophilia wards in government hospitals has fallen on deaf ears. The study on haemophilia should be part of medical curriculum, as even many medical practitioners are still not fully aware of disease ,” E. Raghunandanan, chairman, Hemophilia Federation, Regional Council (South) said.
Life of struggle
Life of a haemophilia patient is a constant struggle, as he could expect next bleeding episode any time. They often become anaemic due to continues bleeding. According to survey conducted by the haemophilia society, more than 70 per cent of haemophiliacs are disabled owing to lack of timely treatment.
Members from 27 chapters of the Federation in South India participated.
The regional council meeting of Haemophilia Federation held here on Sunday urged the government to provide sufficient support for the patients suffering from haemophilia, a life-long genetic disorder that prevents clotting of blood.
Clotting factor
People with this disorder will not have enough of a particular clotting factor in their blood.
The disorder is managed by injecting the missing clotting factor (anti-haemophilia factor). Addressing the meeting, Dr. Abraham Koshi, Director Research & Hepatology, Lakeshore Hospital, Kochi, said the haemophilia patients, who cannot afford treatment of Hepatitis C, could avail themselves of free treatment now.
The haemophilia patients become vulnerable to the Hepatitis A, B, and C, when they depend on blood particles, instead of anti-haemophilia factor (AHF) for arresting the bleeding.
“Unavailability and the high cost of AHF prompt them to go for the blood particles. If not careful, there are chances of transmission of diseases like Hepatitis A, B, and C, and HIV during transmission of blood particles,” said Dr. Koshy.
He said now effective medicines were available for Hepatitis C and it could be cured with treatment of just three months, he said.
An adult haemophiliac requires 2,000-3,000 units of AHF to treat one bleeding episode. Thus, the annual treatment cost will exceed Rs.1.5 lakh for a patient with frequent bleeding.
Statistics shows that there are more than 10,000 haemophilia patients in the State. Men are mostly affected by the disorder, as the women usually are carriers.
“Our demand to set up haemophilia wards in government hospitals has fallen on deaf ears. The study on haemophilia should be part of medical curriculum, as even many medical practitioners are still not fully aware of disease ,” E. Raghunandanan, chairman, Hemophilia Federation, Regional Council (South) said.
Life of struggle
Life of a haemophilia patient is a constant struggle, as he could expect next bleeding episode any time. They often become anaemic due to continues bleeding. According to survey conducted by the haemophilia society, more than 70 per cent of haemophiliacs are disabled owing to lack of timely treatment.
Members from 27 chapters of the Federation in South India participated.
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