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The Haemophilia and Health Collective of North (HHCN), a registered body of healthcare professionals working in the domain of haemophilia care, launched a proposed guideline for the treatment of Persons with Haemophilia (PwH) on Thursday.
Claiming to be the first set of local directives for haemophilia treatment, the guidelines have been released in collaboration with National Health Mission (NHM) representatives from 16 states.
Speaking on the importance of these guidelines, Naresh Gupta, Chairman, HHCN said that India has the second-largest population of haemophilia patients in the world, with an estimated 136,000 patients grappling with Haemophilia A. “This necessitates a set of localised guidelines in a country living with this unique need,” he said.
The new guidelines recommend the use of prophylaxis as the standard of care in haemophilia patients to prevent them from bleeding. The directives also underline the need for comprehensive care, including the significance of timely diagnosis, physiotherapy, and multidisciplinary care for PwH.
Nearly 80 per cent of haemophilia cases are currently undiagnosed in India as several hospitals and medical institutions lack screening capabilities for blood clotting. “The most important initial step is to correctly diagnose haemophilia patients, with personalised prescription of drugs being necessary,” K K Kaul, President, HHCN said.
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Speaking on the effects of haemophilia, Gupta said the two biggest problems with the disease are the disability that it causes and the relatively younger age of patients. “India became one of the only countries in the world to classify haemophilia patients as disabled, by adding persons with haemophilia, thalassemia, and sickle cell anaemia in the Rights of Persons with Disability Act in 2016,” he added.
Explaining how the disease works, Kaul said that haemophilia is an X-chromosome linked congenital bleeding disorder that slows the blood clotting process due to a lack of a protein called factor 8, caused by gene mutations. “As a result, people with Haemophilia A bleed for a longer time than normal due to deficiency of clotting factor 8,” he added.
According to HHCN data, a person with Haemophilia A, on average, experiences 30-35 bleeds a year, with each bleed reducing at least 15 days of life and possible complications leading to early mortality or morbidity.
The new guidelines recommend the adoption of advanced care to tackle bleeding incidents, reduce disability, and improve the quality of life for haemophilia patients.
Speaking on the focus of the guidelines, Koul said that we don’t just want to stop bleeding but the focus should also be on improving the socio-economic status of haemophilia patients. “The current treatment regimen includes the development of inhibitors to factor 8. This complicates treatment and leads to the usage of bypassing agents that are significantly more expensive,” Kaul added.
