World Haemophilia Day
April 17, 2023 is World Hemophilia Day. The theme of the event this year is “Access for All: Prevention of bleeds as the global standard of care”. Building on last year’s theme, the call to action for the community in 2023 is to come together and advocate with local policy makers and governments for improved access to treatment and care with an emphasis on better control and prevention of bleeds for all people with bleeding disorders (PWBDs). This means the implementation of home-based treatment as well as prophylactic treatment to help those individuals have a better quality of life.
World Hemophilia Day is a global healthcare event celebrated on the 17th of April every year, started by the World Federation of Haemophilia (WHF) with the intention to raise a call for the government authorities and local policymakers for the provision of a better treatment and care in addition to promote better control and prevention with haemophilia.
A rare severe, inherited haemorrhagic disorder, haemophilia is caused by malfunction of factor VIII and factor IX protein (factors required for blood clotting/ coagulation), leading to an abnormality in blood coagulation. Although people of all races and ethnicities can be diagnosed with haemophilia, men are more likely to be affected because the ailment is connected to the X chromosome. There is a
50% probability that a boy whose mother carries the haemophilia gene will also be affected by haemophilia, and her daughter being 50% risk of being carrier. Hence, haemophilia is more common in males, despite the fact that it can affect females causing difficulties with menstruation and childbirth.
In 2000, it was estimated that 4 lakh persons, or around 1 in 10,000 live births, were affected by this disorder worldwide, and only 25% of those affected had access to adequate treatment. In 2019, however, a meta-analysis showed that the number of men with the inherited bleeding condition is far higher, at 11.25 lakh.
Even in high-income nations, only about 15% of the global population, has access to effective treatment for haemophilia. The lack of resources for diagnosis and treatment leads to high mortality and morbidity rates in low- and middle-income countries.
We in Jammu and Kashmir like region should also take pledge to provide best diagnosis, care, drugs and treatment to hundreds of patients facing this Haemophilia disease.
In India, a large per cent of haemophilia cases are still undiagnosed especially in remote area, and the need of the hour is we pledge to make situations better for Haemophilia disease patients.
Jammu and Kashmir needs an effective policy to tackle Haemophilia as expert pulse is many cases still go undiagnosed.