Haemophilia Society has now sought better infrastructure to treat the 3,000 patients in the state.
“We want all medical colleges in the city (Mumbai) to stock anti-haemophilia factor and have day-care centres, so that patients don’t have to travel all the way to KEM. Infrastructure needs to be strengthened,” said Balshiram Gadhave, vice-president of the Mumbai chapter.
Haemophilia is a rare blood disorder. Patients lack factors VIII (8) or IX (9) in blood, which prevents clotting. Replacement of the factors, essential to prevent continuous bleeding, costs a minimum Rs 9,000. Haemophilia is common in men and women are carriers.
“We have been working with the government for almost 15 years, most actively in the past 4-5 years, to ensure better haemophilia treatment. Long-pending proposals have resulted in patient deaths. A large number of haemophiliacs in rural areas are being deprived of treatment because of the delay,” Gadhave said.
While the state has 3,000 registered patients and the city 1,250, research suggests one in 10,000 men contracts haemophilia. This means a large number of cases are not registered.
At a hearing last week, Haemophilia Society told HC a proposal to provide free medicines was pending since 2010. “We have put forth testimonies of two haemophiliacs who were told by doctors at KEM that the hospital does not have clotting factor. There has also been a death because the patient could not afford medicines and there was delay in treatment. The worst thing that can happen to a patient is death due to unavailability or unaffordability of medicines,” said Paresh Parmar, patient and secretary of the society.