An appeal to the Government of India
Disability with Hemophilia Patients in India
According to the studies, chronic shortage of clotting factor concentrates, exorbitant treatment costs and the poor economic status of patients, makes disability an inevitable consequence of haemophilia in India.
The prevalence and risk factors for disability were studied in 148 patients with severe haemophilia A registered at five haemophilia clinics in the country. Disability was measured using a scoring method that used a compilation of functional ability, mobility and range-of-motion scores for each patient. Patients ranged in age from 5 to 55 years. Only nine of 148 patients were free of disability. The proportion of disability free patients in the 5-12, 13-24 and 25+ age groups were 14.3%, 4.4% and 0% respectively. The risk factors significantly associated with disability were patients age, socio-economic status, number of persons in the family, family history of haemophilia, frequency of physiotherapy exercises, home use of coagulation factor concentrate and type of blood product(s) used, that is clotting factor concentrate or cryoprecipitate.
The study highlights the need to provide coagulation factor concentrates in sufficient amounts to prevent disability, the beneficial role of physiotherapy exercises and the advantage of older patients as peer educators for younger patients. The most important utility of the data is to demonstrate the widespread prevalence of disability amongst patients, its social costs in terms of incomplete education and unemployment, which justifies the need to include haemophilia as one of the conditions under the Disability Act of India.
Similarly, according to the records of HFI, of the 16, 672 PwH/CwH (so far identified by us) most are disabled to varying extents. Despite of our constant efforts for the last 27 years, hemophilia still has not been included under the Persons with Disability Act 1995. To improve the lives of the PwH and CwH of the country it is very important to include Hemophilia under the Disability Act.
We therefore, appeal to the Ministry of Social Justice and Empowerment, Govt. of India, to consider our appeal and thereby bring about the long awaited change in the lives of the Hemophiliac of our country.
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