NEW DELHI: Kerala and Jammu and Kashmir are the two states in the country that are leading in providing a better quality of life for persons with hemophilia (PwH), an inherited blood disorder, with comprehensive care and treatment.The implementation of prophylactic treatment, which prevents the disease from occurring for persons with hemophilia (PwH) in the two states, has been a game-changer, so much so that some other states like Karnataka, Telangana, Assam, Jharkhand, and Goa are now trying to replicate the success story.The new treatment not only promises a better quality of life without the fear of disability and subsequent mortality but is hugely cost-effective, too.Veena George, Minister for Health and Woman and Child Development, Kerala, said, “We are committed to providing comprehensive care for hemophilia patients, ensuring they receive international-standard treatment and support.”“We aim to enhance their quality of life and make innovative treatments accessible. Aligning with this mission, Kerala has taken pioneering steps,” she told this paper.Hemophilia is a rare bleeding disorder that primarily affects men, and the blood does not clot properly. This leads to problems with bleeding too much after an injury or surgery. The bleeding can even start inside one’s body, such as joints, muscles, and organs, like the brain, which can be life-threatening. Children are the worst affected.In India, 28,000 people are registered with the National Hemophilia Registry, including those with Hemophilia A, Hemophilia B, and other inherited bleeding disorders. Before prophylactic treatment was introduced, people with hemophilia would receive government treatment only when they bleed, leading to inefficient care and compromised quality of life.“We were the first state in India to provide prophylaxis care for patients under 18 years of age, reducing the treatment burden on patients and caregivers such as frequent hospital visits, caregiver job loss, etc., typically associated with on-demand therapy,” she said.She said the state decentralised treatment from medical colleges to district and taluka-level hospitals, which made it more accessible for PwH.“Furthermore, we provide select patients with innovative therapies like Emicizumab.” Emicizumab is a medication used to treat hemophilia A.Kerala has 2,094 hemophilia patients registered in their program.
Source link
