World Hemophilia Day: The importance of equitable access for all

Title page with two women for World Hemophilia Day highlighting eduitable access to treatment for all

 

April 17 is World Hemophilia Day – a day created by the World Federation of Hemophilia to educate people about the causes, symptoms, diagnosis, and management of haemophilia, as well as the challenges faced by those living with the condition.

Haemophilia is a rare genetic bleeding disorder that prevents blood from clotting. [1] Left untreated, it can be extremely debilitating, making everyday -activities dangerous for those affected by the disease.

The prevalence of haemophilia varies globally, with close to 100% of patients diagnosed in high-income countries and as low as 12% diagnosed in lower-income countries. [2]

The disease was also traditionally recognised as predominantly a male disorder, however it can also manifest in women, albeit less commonly. Diagnosing haemophilia in women presents unique challenges due to its atypical presentation. [3] Early detection is pivotal for effective management and preventing complications, so increased awareness among healthcare professionals regarding haemophilia in a diverse patient population is essential to ensure timely diagnosis and appropriate care.

Consequently, this year’s focus for World Hemophilia Day is an important one. It centres around “Equitable access for all: recognizing all bleeding disorders” and advocates for “Treatment for All,” where individuals with inherited bleeding disorders receive care without discrimination based on the type of bleeding disorder, gender, age, or geographical location.

As a global medical communications agency with a strong heritage working with clients to advance the treatment of haemophilia, Porterhouse is proud to support the bleeding disorders community in striving for a world where everyone has equal access to diagnosis, treatment, and comprehensive care.

For more information regarding haemophilia, the National Bleeding Disorders Foundation has published this fact sheet:

HANDI Hemophilia Fact Sheet

References

1, Centres for disease control and prevention: What is Hemophilia? Available at: https://www.cdc.gov/ncbddd/hemophilia/facts.html  Accessed April 2024

2, The World Federation of Hemophilia World Bleeding Disorders Registry: insights from the first 10,000 patients. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10772874/. Accessed April 2024

3, Centres for disease control and prevention: Hemophilia characteristics among women. https://www.cdc.gov/ncbddd/hemophilia/features/hemophilia-characteristics-among-women.html Accessed April 2024