Study finds care, treatment limited for hemophilia patients in Thailand
Still, efforts are being made to improve country's health outcomes
Hemophilia treatments in Thailand are limited due to a lack of budgetary resources, the high cost of medications, and an infrastructure inadequate for supporting patient care, a study found.
These hurdles mean that people with hemophilia in the Southeast Asian country may not be able to access the care they need, which can lead to poorer health outcomes.
However, according to researchers, efforts are being made throughout the country to enable greater access to treatments and to improve overall health outcomes for hemophilia patients.
“Despite the challenges … Thailand has progressed substantially in providing the required hemophilia care, as evidenced by an evolution in acquiring and sharing knowledge as well as collaborative efforts among multiple stakeholders over the past three decades,” the team wrote.
The study, “Practices and challenges for hemophilia management under resource constraints in Thailand,” was published as a letter in the Orphanet Journal of Rare Diseases. The study was funded in part by Pfizer, which is developing treatments for hemophilia.
Costs of treatments often not reimbursed for patients
Hemophilia occurs when a person’s blood does not clot properly due to the lack or malfunction of a specific clotting factor — a protein that helps the blood to form clots and to stop bleeding.
There are several types of hemophilia, each dependent on which clotting factor is missing. In hemophilia A, patients lack factor VIII, while individuals with hemophilia B lack factor IX.
Usually, the less clotting factor that’s produced, the more severe are the symptoms. These can include spontaneous bleeds, as well as bleeding episodes following an injury or surgery.
A survey by the World Federation of Hemophilia in 2020 found that, in Thailand, only 1,828 people with hemophilia were registered to get help from the national healthcare system. Specifically, there were 1,615 people with hemophilia A and 213 with hemophilia B.
“The reason for the low number is the underdiagnosis which is a major concern in the real-world practice among Asian countries,” the researchers wrote.
For comparison, there were about 33,000 hemophilia patients in the U.S. as of August 2022.
In Thailand, most people receive an initial diagnosis of hemophilia from a general practitioner, pediatrician, or internist at rural hospitals. Only then they are referred to specialists at hemophilia treatment centers, where the diagnosis is confirmed.
Once confirmed to have hemophilia, patients are offered replacement therapy with clotting factor concentrates to provide the clotting factor they are missing. This is done “particularly for severe and moderate hemophiliacs with frequent bleeds,” the researchers wrote.
Implementation of adequate prophylaxis remains a major challenge in Thailand due to a limited budget allowance. … [Costs] exceeds the reimbursable budget and could cause financial burden.
Among the country’s hemophilia patients, most had severe (51.2%) or moderate (30.2%) disease. However, of the 947 people with severe hemophilia, only 365 (38.5%) were registered to receive preventive treatment (prophylaxis) with clotting factor concentrates.
“Implementation of adequate prophylaxis remains a major challenge in Thailand due to a limited budget allowance,” the researchers wrote.
Each year, people with hemophilia are reimbursed expenses related to 34,500–55,500 international units (IU) (about 750–1000 IU per week) of factor VIII concentrate or 23,000–24,000 IU (about 500 IU per week) of factor IX concentrate. This is less than the recommended dosage for adequate prophylaxis.
For hemophilia patients needing such treatments, “cost exceeds the reimbursable budget and could cause financial burden,” the researchers wrote.
Moreover, some people develop antibodies, known as inhibitors, which can lower the effectiveness of replacement therapy. A proportion of people in this study (5.6%) tested positive for clotting factor inhibitors. Such a low proportion may indicate “limited accessibility to inhibitor assays” at hemophilia treatment centers, the team noted.
Researchers suggested a few actions to tackle the challenges of hemophilia in Thailand, such as guidelines to ensure consistent care, educational initiatives to promote community awareness, and an increase of budgetary resources for replacement therapy.