No government hospital in the state provides free treatment to patients suffering from haemophilia,said former president of the Haemophilia Federation of India,Pune chapter,Anil Lalwani. There are 660 such patients registered with the Federation in Pune. Dr K Ghosh,president of the Haemophilia Federation of India and Director of the National Institute of Immunohaemotology at KEM hospital in Mumbai,said there are at least 15,000 patients registered in the country.
An estimated 1 in 1,000 adults has a bleeding disorder and 75 per cent get inadequate treatment or no treatment. On April 17,World Haemophilia Day,experts with the Haemophilia Federation of India have urged the government to be true to the theme of close the gap and ensure treatment.
Haemophilia is manageable. The treatment is in the form of intravenous injections of life-saving medicine called Anti Hemophilia Factor. This is extracted from human blood and hence it is very expensive. Despite reminders to the government to subsidise the cost of treatment and introduce it at government run hospitals,Maharashtra health officials have yet to take a decision on the issue. Other states like UP,Karnataka and Delhi have patients availing of treatment at government-run hospitals,Lalwani said.
Many functions were held on Sunday. We planned functions ahead of the main day and have launched a haemophilia wellness centre, said Lalwani. On World Hemophilia Day,there is a need to help us spread the message to Close the Gap. Together,we can work towards a day when treatment will be available,said Ghosh.
The reality is that most people with haemophilia or other bleeding disorders do not receive adequate diagnosis,treatment and management for their conditions. This is important whether good treatment is already established but needs to be protected or where treatment needs to be improved.
Patients with these disorders bleed for longer than normal,either as a result of injury or spontaneously without an external cause. The severity of bleeding depends on the amount of clotting factor that is missing or not functioning properly,which in haemophilia A and B – the most common types of haemophilia – is the coagulation factors VIII and IX,respectively, said Ghosh.
A proposal has been submitted to allocate Rs 25 crore for the project where treatment will be available for such patients. The treatment cost is not less than Rs 9,500 per month and while the federation raises funds from wellwishers,on the occasion of World Haemophilia Day another memorandum will be submitted to the government,Ghosh added.
According to a recent report in medical journal The Lancet,of the estimated 4 lakh people with haemophilia worldwide,only about a third have been diagnosed. At a time when non-communicable diseases have moved up the global health agenda,governments need to be more aware of chronic genetic diseases,such as haemophilia,which are complex conditions and poorly understood by policy makers,the report says.