Global survey finds many women with hemophilia face diagnostic gaps
Researchers say nearly a third of patients are female but many lack proper care
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- Many women with hemophilia are undiagnosed due to systemic barriers and social stigma.
- Symptoms include abnormally easy or prolonged bleeding, often overlooked due to misconceptions.
- Efforts are needed to improve diagnosis, clinical awareness, and treatment access for women.
While nearly one-third of people living with hemophilia are female, a new global survey reveals that many of these patients remain undiagnosed due to systemic healthcare barriers and social stigma.
Researchers representing the World Federation of Hemophilia (WFH) are calling for a coordinated effort to improve diagnostic access and clinical awareness, noting that women and girls frequently face significant delays in receiving treatment.
The study, “Key Findings From the World Federation of Haemophilia National Member Organization Survey on Women and Girls With Bleeding Disorders,” was published in Haemophilia and funded by the WFH.
Hemophilia refers to a group of disorders in which the blood cannot clot properly, leading to symptoms such as abnormally easy or prolonged bleeding. Hemophilia is one of several types of bleeding disorders, which also include other conditions that lead to abnormal bleeding.
The myth of the male-only disease
The most common forms of hemophilia are genetic disorders caused by mutations on the X chromosome, one of the two sex-determining chromosomes. Because of this, hemophilia is generally more common and more pronounced in men who have only one X chromosome. Nonetheless, women with two X chromosomes can have hemophilia. In fact, even though hemophilia is often incorrectly thought of as an exclusively male disease, the WFH estimates that nearly a third of hemophilia patients are women.
In general, women and girls often face more barriers to accessing healthcare due to factors like stigma and sexism. Women and girls with hemophilia and other bleeding disorders may face additional unique challenges, but data on the experiences of these patients is sparse because researchers often focus on men.
“Sexism has consistently been an issue in bleeding disorders over time, resulting in [women and girls with bleeding disorders] being underrecognized and underdiagnosed, facing diagnostic delays, and being made to feel that their symptoms are not significant,” the researchers wrote.
To gather more information on how women and girls are affected by bleeding disorders, the WFH conducted a survey of its member organizations. A total of 82 organizations representing every continent except Antarctica responded.
Nearly half of the survey respondents (43.34%) agreed that women and girls with bleeding disorders often fail to seek care for themselves because they often see themselves not as potential patients, but as caregivers.
“Cultural and social barriers remain among the greatest challenges faced by [women and girls with bleeding disorders], including being viewed primarily as caregivers and not as individuals with a bleeding disorder,” the researchers wrote. They noted that women and girls with these disorders may fail to recognize symptoms as abnormal because their female relatives experience the same issues. This is particularly the case with topics like menstruation that carry cultural taboos.
Many of the respondents also noted that women and girls with bleeding disorders may experience economic barriers to care. In line with this, the researchers found that organizations from poorer countries consistently reported less availability of diagnostic tests.
Economic obstacles and systemic gaps
Survey results also showed that just under half of the organizations surveyed offer programs specifically geared toward women and girls with hemophilia, and similarly, slightly less than half routinely collect data on this specific population.
“The goal of this survey was to understand the situation for [women and girls with bleeding disorders] in WFH member countries to inform WFH programmes and initiatives to better serve this population. Results showed that significant gaps remain in knowledge and care, with cultural, socioeconomic, and systemic barriers contributing to delayed diagnosis and limited treatment,” the researchers concluded.
Based on these findings, the researchers offered a range of recommendations to improve life for women and girls with bleeding disorders. These included efforts to raise awareness and promote education among patients and healthcare providers, as well as steps to expand treatment access and ensure women with these conditions are included in leadership within bleeding disorder organizations.
