APRIL marks National Hemophilia Awareness Month in the Philippines.
Hemophilia is a medical condition often unseen, yet it is a deeply challenging internal battle for those who live with it.
Hemophilia is a rare, inherited bleeding disorder in which the blood does not clot normally due to a deficiency in essential clotting factors. People suffering from the malady experience prolonged or excessive bleeding after an injury, making them prone to bruises and internal bleeding.
According to the Department of Health (DOH), hemophilia affects one in every 10,000 male children born in the country. While the outward manifestations of this condition may not always be apparent, a lifelong internal struggle is a significant reality for individuals living with illness, which calls for greater awareness and support.
Unseen burden
Mae Baylosis Vega, a mother to two children with hemophilia, shared how the diagnosis of her sons at a young age changed their lives, shaping their childhood experiences worrying about potential life-threatening bleeding episodes.
Joachim Eldrich Vega, son of Mae Vega, was only 7 months old when he was diagnosed with hemophilia. Despite spending much of his childhood visiting hospitals for treatment, he continues to showcase remarkable resilience and willingness to thrive. (Photos courtesy of Mae Vega)
“My first son was only seven months old when symptoms started showing. During a regular check-up, a stranger pinched his cheek because she found him adorable. A few days later, his cheek became swollen, and he had a fever. We brought him back to the hospital, and while getting blood samples, he struggled. The nurses had to restrain him tightly, wrapping him in cloth and holding his arm firmly,” she narrated.
“The next day, his entire arm became swollen and bruised. We transferred him to Philippine Children’s Medical Center (PCMC), where he was diagnosed with Severe Hemophilia A,” she added.
The diagnosis of her first son led Mae to get her youngest son tested for hemophilia out of concern. Later, the test confirmed that he also had the bleeding disorder.
“That moment was equally heartbreaking, but it gave us a chance to prepare early and give him the care he needs,” said Mae.
Despite the difficulties in accepting her children’s lifelong delicate condition, Mae mustered the courage to be her son’s advocate to ensure they grow up in a supportive environment and receive the best possible care.
At times, both her children will need hospitalization one after the other or even at the same period. She highlighted the constant emotional, physical, and financial strain of navigating the complexities of hemophilia, a journey she embraced with unwavering resolve for her son’s better future until one of her children lost his battle to hemophilia.
“The most painful part of our journey was losing my youngest son at age 3 due to brain bleeding. It happened suddenly, similar to an aneurysm, which is sadly common among children with hemophilia due to their fragile and underdeveloped veins. We couldn’t save him in time,” she recalled.
To honor his son’s memory, Mae joined advocacy groups to help raise awareness about hemophilia, especially among children who feel isolated or different due to their condition.
“It’s important to help the child understand their condition well. Never let them feel weak. They are not weak. They are not different, they simply need to be treated with extra care,” she stressed.
Being part of the Hemophilia Advocates-Philippines (HAP) also gave her a sense of comfort that she is not fighting the battle alone.
“It’s comforting and empowering to be surrounded by people who truly understand your journey—the struggles, the fears, and the little victories. We share stories, give advice, and lift each other up. It’s not just about medical support, it’s emotional and spiritual support, too,” said Mae.
For conditions like hemophilia, raising awareness is not only an important step forward in creating a safer, sensitive, and supportive environment for those living with this condition. Being informed of early signs and symptoms can also lead to timely diagnosis and access to crucial interventions.
Help is available
The significant costs associated with managing her two children’s hemophilia meant there were many times Mae and her family ran out of money.
Her both children had developed inhibitors as a result of undergoing treatments since infancy. This means that they could no longer respond to regular treatment with Factor VIII which costs approximately P5,000 per vial in 2014. This treatment replaces the missing or deficient clotting factor in the blood to prevent or control the bleeding episodes of the patient.
Mae’s sons had to switch to Factor VII, a more advanced and expensive treatment, which costs around P60,000 per vial and requires at least six to 12 vials per treatment.
“The financial burden was crushing, but we did everything we could because love drives us to fight, no matter how impossible the odds may seem,” said Mae.
Aside from the cost, one of the hardest challenges she had to overcome was the availability of the medicine. Even if she managed to find ways to cope financially, it did not matter when the life-saving medication was simply out of reach. Her only recourse is to wait – a wait that could potentially cost a life.
The Philippine government has taken significant steps to extend a helping hand to Filipinos struggling with hemophilia. Aside from institutionalizing commitment to establish collective understanding of hemophilia pursuant to Proclamation No. 1478, s. 2008, declaring the month of April as “National Hemophilia Awareness Month,” the government has been actively working on initiatives to improve access to diagnosis, treatment, and comprehensive care for individuals living with this condition.
The Philippine Health Insurance Corporation (PhilHealth), in particular, increased the coverage of the benefit package for Hemophilia Case Rate from P16,640 to P24,960 to improve the access of families to affordable lifesaving treatments and other essential medical services.
The DOH is also continuously collaborating with support groups like the Hemophilia Philippines Foundation, Inc. (HAPLOS) and the Hemophilia Advocates – Philippines (HAP) to help advance the cause of hemophilia care, especially in terms of identifying patients with the bleeding disorder and empower them to achieve a better quality of life. (JMP/PIA-NCR)
