World Hemophilia Day, WHD 2025 Fights For Equal Access For All

Hemophilia is a rare disorder that makes it difficult for a person's blood to freeze as usual. If a person without hemophilia experiences minor injuries that quickly stop flowing, people with hemophilia can actually experience bleeding longer even from trivial wounds.

For some people, these symptoms have appeared since childhood and can be very dangerous if they are not treated properly. Unfortunately, there are still many people who do not understand this condition, including the fact that women can also experience symptoms of hemofia.

In commemoration of World Hemophilia Day (WHD) 2025, which falls every April 17, the Indonesian Hemophilia Community Association (HMHI) in collaboration with PT Takeda Indonesia invites the public to get to know and care more about bleeding disorders, such as hemophilia and Von Willebrand Disease (VWD).

This year, World Hemophilia Day carries the theme Access for All: Women and Girls Bleed Too, highlighting the importance of fair access to examination and treatment for all patients, including women and girls who have been underdetected.

Hemophilia is usually passed down from parents and arises because the body lacks blood clotting protein. This condition causes a person to easily experience bruises or bleeding, either after injury or spontaneously for no apparent reason.

This disease is divided into two types, Hemofilia A, which occurs due to the low freezing factor VIII, and Hemofilia B, due to the low IX factor. The less levels of this factor, the worse the risk of bleeding.

According to data from the World Federation of Hemophilia, hemofilia is estimated to affect around 1 in 10,000 people in the world. However, in Indonesia alone, the number of diagnosed cases is still very low. Based on HMHI data in 2024, only about 11% of the total estimated number of patients detected is only about 3,658 out of 28,000 cases estimated in Indonesia.

So far, hemophilia is often considered only to have an impact on men, while women only become gene carriers. In fact, many women also show symptoms of bleeding, but are often not realized or diagnosed. This makes them have to live life for years without knowing the cause of their condition.

Dr. dr. Novie Amelia Chozie, SpA(K), Chairman of HMHI, stated that most of the cases of hemophilia in Indonesia were only discovered after patients experienced severe bleeding. This condition certainly risks serious complications, ranging from defects to deaths.

One of the major complications is the emergence of inhibitors, namely antibodies that attack blood clotting drugs so that therapy becomes ineffective. A study from the Indonesian Pediatrician Association (IDAI) in 2022 found that 9.6% of children with hemophilia A in 12 major cities experienced this condition.

In addition to the challenge of diagnosis, hemophilia patients in Indonesia also face limited access to treatment. "Health services such as examination of freezing factors and more medicines are available in big cities. Meanwhile, patients in remote areas often have difficulty accessing proper treatment," explained dr. Novie.

Therefore, he emphasized the importance of increasing the equitable distribution of services and education to health workers and the community.

Not only hemophilia, but Von Willebrand Disease (VWD) is also one of the bleeding disorders that is often neglected. VWD is caused by a shortage of von Willbrand factors in the blood, which makes the sufferer experience symptoms such as easily bruised, bleeding, severe menstruation, or bleeding after giving birth. Because the symptoms are often considered mild, many cases are not detected properly.

Cerita pasien hemophilia

HK, a person with hemophilia, shared his life experience for more than 34 years with this condition. He has undergone various treatments such as blood transfusions and the provision of concentrat freezing factors.

"I often meet other patients, both children and adults, who are experiencing difficulties because this disease has not been recognized from the start," he said. He hopes that public education and government support through drug guarantees from BPJS can continue to be improved.

Meanwhile, SRS, a 17-year-old VWD patient, said that she had only been diagnosed after experiencing constant bleeding since the age of 7.

"Initially the symptoms were mild, so I didn't find out. But in the end I got a diagnosis at a government hospital and since then I started undergoing treatment," he said. He hoped that in the future the public would get to know VWD better so that patients could be treated appropriately.

Shinta Caroline, Head of Oncology & Rare Disease Business Unit at PT Takeda Indonesia, said that it continues to be committed to becoming a partner in improving services and awareness related to rare diseases.

Together with HMHI and medical personnel, we want to ensure that people with bleeding disorders can get an early diagnosis and proper treatment.

As part of educational and patient support efforts, HMHI also launched an official website with a new, more interactive look. Through this site, the public can access information about hemophilia, VWD, as well as inspiring stories from patients. The site also provides a Hermofilia friend feature to help patients and families connect with the community and get help.

HMHI hopes that access to freezing factors, including inhibitor tests, can be expanded to more areas in Indonesia. Likewise with the availability of treatment, so that patients no longer need to wait long to get the therapy they need.