A large collective of haemophiliacs, who gathered to observe the World Haemophilia Day on Wednesday here, appealed to the State government to extend the Chief Minister’s Medical Insurance Scheme to all persons suffering from haemophilia. They also demanded a monthly assistance for the haemophiliacs, to maintain themselves.
The meet was organised by the CMC hospital to mark the 50th anniversary of the World Federation of Haemophilia, aimed at creating awareness among the haemophiliacs and help them learn new treatment and rehabilitation measures.
Speaking to Express, 30-year-old Subramanian, a native of Vellore who had been struggling to survive the deadly disease, urged the government to extend the treatment facility to all the government hospitals and PHCs. He said all the government health care institutions should stock enough blood clotting factor concentrates.
Sadiq, a worker in a tea shop in Gudiyattam, whose two sons in the age group of 1 to 5 had been diagnosed with haemophilia, said the State should provide social assistance to haemophiliacs considering them as disabled. Rabia, a beedi roller whose three sons had been living with haemophilia for the past 20 years, said poverty was forcing the boys to work hard. However, they would suffer internal bleeding if they worked any harder. The others narrated their miseries too. “Every injury, whether internal or external, is very expensive for us,” noted Sundari, a mother of two haemophiliacs from Salem.
Dr George Tharion, of the Department of Physical Medical Rehabilitation at CMC, said the patients diagnosed to be suffering from haemophilia were given total care with the help of experts from various departments such as haematology, physiotherapy, orthopaedics, hepatology and molecular biology.
His colleague Dr Auro Viswabandhya, of the Haematology Department, said the hospital was offering antenatal diagnosis to find out if the child in the womb would be affected by genetic disorders if the mother was a carrier. Only a very few States, including TN, were offering free blood clotting factor concentrates through the government medical college hospitals, he said.
Dr G O Bharani, assistant professor at Vellore Government Medical College Hospital, said, 17 patients had been registered at the haemophilia clinic at the hospital who were being treated free of cost. While 6.9 million were suspected to be suffering from haemophilia worldwide, 75 per cent of the cases went undiagnosed, she added.