Haemophilia is a chronic genetic condition because of which even a relatively minor injury can result in death because blood fails to clot. Sufferers of haemophilia need to receive shots with factors that cannot be produced by their bodies and that are essential for clotting. The vast majority of sufferers are men.
Currently, India does not have a national policy on preventing and controlling genetic disorders like haemophilia. While these conditions are relatively rare, because India has the largest birth cohort in the world, in absolute terms, the numbers of people suffering from these disorders is quite high.
In the case of haemophilia, it is estimated that 1 in 10,000 Indians suffers from it, which means that there are at least 100,000 patients in the country. This is a relatively large burden of patients and therefore warrants a comprehensive public health intervention in the form of preventive and supportive services.
Moreover, there are several social and economic costs associated with the disorder.
1. Patients' lack of access to treatment
Inadequate access to treatment remains a major challenge in India, thereby affecting the quality of life of patients adversely. In a number of western countries, haemophiliacs receive regular injections of the clotting factor even in the absence of an injury. This is not the case in India. While some states offer the factor free of cost in public hospitals, others don't. Also some states offer the factor at only a few facilities which also limits access to treatment, especially for those who are socio-economically more vulnerable. The factor is expensive as a single shot can cost up to Rs 10,000 and hence is out of reach for poor patients.
2. Joint damage and disability
If a haemophilia patient does not receive timely medical help when he is injured, it leads to a weakening of his joints and can eventually result in disability. A study conducted in India showed that only 9 out of 148 patients did not have a disability. Many of these patients were young boys who belonged to socio-economically weaker sections of society.
3. Effect on education and employment
Frequent bleeding episodes and the associated excruciating pain causes many students to miss or drop out of school. Poor education results in a large number of patients being unable to find gainful employment. This is exacerbated by their inability to do certain types of jobs (such as those requiring physical labour) in the absence of regular treatment and prevention of disability.
4. Emotional costs and stigma
Haemophilia causes considerable distress to the families of patients because of the frequent bleeding episodes and consequent disability, as well as due to the high cost of treatment. Parents from poor backgrounds suffer from guilt and hopelessness due to the condition of their child and their inability to access appropriate treatment for him. Additionally, some people consider the condition to be a "curse", which means haemophiliacs often do not participate in family functions or marriage ceremonies which only worsens their mental condition and quality of life.
The combination of a large patient burden and the socio-economic costs of neglecting the condition suggests that India needs to consider a comprehensive national program for haemophilia. The emphasis needs to be not only on providing free factor at all public facilities but also supportive services for patients and their families including counselling and physiotherapy.
Co-authored by Sandesh Dubey, Senior Program Manager, Operation ASHA.