Kerala and Jammu & Kashmir are at the forefront of improving the quality of life for individuals with hemophilia (PwH), a hereditary blood disorder, through comprehensive care and treatment. The introduction of prophylactic treatment in these states has been a transformative step, prompting other states like Karnataka, Telangana, Assam, Jharkhand, and Goa to follow suit.
This new approach not only enhances the quality of life by reducing the risk of disability and death but is also highly cost-effective. Kerala’s Health Minister, Veena George, emphasized the state’s commitment to providing world-class treatment and support for hemophilia patients, noting that Kerala has made significant strides in this area.
Hemophilia is a rare genetic condition that predominantly affects men, preventing their blood from clotting properly. This can lead to excessive bleeding, even from minor injuries, and can result in internal bleeding in joints, muscles, or organs, posing life-threatening risks. Children are especially vulnerable.
According to the National Hemophilia Registry, India has approximately 28,000 people with hemophilia, including those with Hemophilia A, B, and other bleeding disorders. Before the implementation of prophylactic treatments, hemophilia patients relied on reactive care, receiving treatment only after a bleed occurred, which significantly impacted their quality of life.
Kerala was the first state to provide prophylactic care to patients under 18, reducing the treatment burden, such as frequent hospital visits and job losses for caregivers. The state has also decentralized treatment to district and taluka-level hospitals, increasing access. Additionally, Kerala offers innovative therapies like Emicizumab, a drug used to treat Hemophilia A, to selected patients. Currently, 2,094 hemophilia patients are registered in the state’s program.
Similarly, in Jammu & Kashmir, hemophilia patients once faced high bleeding rates and missed school frequently due to inadequate diagnostic facilities and overwhelming daycare visits. Dr. Sheikh Bilal Ahmad, a professor at Government Medical College and SMHS Hospital in Srinagar, noted that since the introduction of Emicizumab prophylactic treatment in 2021, there has been a marked improvement in both healthcare costs and patient quality of life. He attributed this progress to the support from the central and state governments, as well as the National Health Mission, which has helped prevent any loss of hemophiliac lives in Kashmir over the past three years.
However, according to Dr. Anupama Pattiyeri of the Hemophilia Federation of India, a large portion of India’s population remains undiagnosed, with only 15% of hemophilia patients identified. Hemophilia affects approximately 1 in 5,000 individuals.
Hemanth Kumar, a communications lead at the Hemophilia Federation and a patient with severe Hemophilia A, shared that the new treatment has significantly improved his life. Previously bedridden for weeks each month due to frequent bleeds, he now enjoys an active life and recommends that the central government make this treatment widely available.
Dr. Rahul UR, Kerala’s Nodal Officer for Child Health and Rare Diseases, pointed out that children are particularly vulnerable to trauma and bleeding, which, if untreated, can lead to joint damage and disabilities. Thanks to prophylactic treatment, these issues have been significantly reduced, leading to lower school absenteeism and better overall health outcomes. In Kerala, over 300 children are receiving regular prophylactic care, involving the administration of clotting factors twice a week.
In Kashmir, Syed Majid Qadiri, President of the Hemophilia Society, noted that patients with Hemophilia A are now able to live fuller lives without the constant fear of bleeds. Many children with hemophilia are attending school regularly and even participating in sports, something their parents are now more comfortable allowing.
