Children with Hemophilia are especially inclined to suffer from depression and stress. Experts in the field of dealing with depression among people with hemophilia, often find that parents can make a big difference in helping their children to cope. However, children with Hemophilia, who also live in abject poverty, have an additional burden to carry. These children feel alone and so do their families. The only situation they are aware of is bleeding episodes, pain, physical disability, and isolation.
According to a study conducted by the World Federation of Haemophilia (Annual Global Survey), almost 50 per cent of the world’s Hemophilia population lives in India and over 70 per cent of this population do not have adequate knowledge of the condition or access to treatment. Therefore, likelihood of fatalities for want of vital knowledge and untreated Hemophilia is exceptionally high.
What is catastrophic is the fact that only about 15% of the total Hemophilia population in India has been identified and registered.
The Hemophilia Federation of India and the Federation’s 63 affiliated and 18 unaffiliated Hemophilia Chapters across the country support the care and well being of patients and families of (PwH) Persons with Hemophilia. This Federation, organized and administered by PWH strives to reach out to government ministries and agencies to provide more support for Hemophiliacs in the country. Their vision, “Hemophilia without Disability, Children Free of Pain” needs a positive response from the government of India to include Hemophilia under Persons with Disability Act 1995 and National Health Mission. In a population of 1 billion, only 20% of the people have access government health insurance. There is no recourse for those such as farmers, laborers, daily wage earners and the poor who have never been employed by the government in any capacity.
So what does the term ‘Hemophilia Awareness’ mean to those who suffer from this condition? Very little if anything at all.
We understand that globally, the general public needs to have some awareness of Hemophilia. Family members, patients, health care professionals, physicians and surgeons can all be placed in ‘the must be aware’ category. Global Organizations, NGO’s like Save One Life and individuals who sponsor children with Hemophilia create awareness by drawing attention to those affected. Save One Life’s president, Laurie Kelly (adult son with Hemophilia), board member Chris Bombardier (severe Hemophilia B) and Patrick James Lynch, (severe Hemophilia A) and founder of Believe Ltd. will be doing just that on the Mt. Everest climb this April. They are drawing attention to the condition of persons with Hemophilia in Nepal. Atlanta International School has had very successful Bake Sales and presentations to support SABHA’s Hemophilia program and create awareness of children with Hemophilia in India. These are just a few examples of individuals doing their best to create awareness of Hemophilia in developing countries.
However, it is governments, particularly in developing countries like India that have a sacred obligation to be fully aware of the importance of working towards providing diagnostic facilities that meet required standards. The criteria for setting up services for Hemophilia must incorporate fundamental procedures such as initiating a comprehensive Hemophilia registry and training more care providers to service India’s vast rural areas.
In India, the need is great for better equipped and all-inclusive Hemophilia care centers that also educate and counsel people with Hemophilia and their families (particularly the mothers) about bleeding disorders. In addition to this, low-cost or free factor concentrates must also be made available in district hospitals so that patients do not have to travel inordinate distances in rural areas to get treatment. It is also crucial to address social awareness, depression and the stigma the mothers of children with Hemophilia face in their respective communities.
No child with Hemophilia should ever feel alone.