Only two government hospitals in the state — both of them in the city — conduct the test that determines what type of haemophilia a patient is suffering from and advocacy groups want more hospitals in districts to do the tests.
A genetic bleeding disorder, haemophilia worsens quality of life, can cause deformities and disabilities and in the worst of cases can even be fatal.
There are some private laboratories that conduct the factor assay test — required to identify the factor responsible for haemophilia — but they, too, are concentrated in Calcutta.
Factors, or clotting factors, are proteins that help in blood clotting. There are 13 clotting factors and the inadequacy of factors eight and nine cause haemophilia, said doctors.
Ajoy Kumar Roy, secretary of Haemophilia Society, an NGO, said absence of factors in the government hospitals also delays the treatment. Patients suffering from haemophilia have to be injected factors at regular intervals to prevent bleeding, doctors said.
“Factors are often unavailable in the hospitals because of which treatment gets delayed. This can have far reaching consequences. If it continues to bleed in the joint in the absence of factors, it can cause deformity. The health department has to ensure that there is uninterrupted supply of factors in the hospitals,” Roy said.
“The health department should also start factor assays tests in more hospitals. These tests are now done only in Medical College Kolkata and NRS Medical College and Hospital. Both of these are in Calcutta. We have urged the state to open such test units at hospitals in north Bengal and in central parts of the state so that people from remote areas do not have to come to Calcutta,” he added.
Roy said the society had a meeting with senior officials of the state health department recently where they flagged both the issues.
There are more than 30 hospitals, including medical colleges, in the state from where factors are administered. Factor injections are administered to prevent the bleeding by increasing the factor levels in the blood, said Maitreyee Bhattacharyya, director of Institute of Haematology and Transfusion Medicine at the Medical College Kolkata.
The damage to the joints caused by bleeding is often irreversible, she said.
“This can lead to deformity of the hands and legs which in turn can cause disability,” said Bhattacharyya.
She added that factor injections were given for two reasons. “On-demand therapy” are situations where factor injections are given when a patient has already started to bleed. “Injections are also given to keep the factor level up so that bleeding does not take place. This is a preventive measure,” said Bhattacharyya.
Doctors said symptoms of haemophilia begin to show when a child starts to crawl. There is joint swelling and pain, bleeding from gum and blood clot at injection site. “At times, there is uncontrolled intracranial bleeding that can turn fatal,” said a doctor.
Govt reaction
“There was a supply issue of the clotting factors because there are only few suppliers. We have sorted that problem and procured adequate factors now,” said a senior state health department official.
“The introduction of factor assays in more state government hospitals is under active consideration,” he said.