Dismantling gender bias to optimize hemophilia care for women and girls
Champion voices to raise awareness, eliminate disparities, and develop next best actions
The evolving global hemophilia ecosystem is driving advancements in treatment and care for individuals with hemophilia. However, ensuring equitable access to optimal care regardless of gender on a global scale remains a challenge. Women and girls with hemophilia, a genetic bleeding disorder, face unique challenges that can lead to additional complications alongside the common symptoms experienced by both men and women, such as joint and tissue bleeds. Factors like menstruation, pregnancy and childbirth can significantly impact their condition.
To deliver comprehensive care for women and girls with hemophilia, it is imperative to prioritize holistic treatment that encompasses several key aspects. This includes ensuring equal diagnosis and treatment opportunities for women and girls, addressing gender biases that exist within the healthcare system, and recognizing the significant need for emotional support.
Bridging the Gap: Dismantling Gender Bias to Ensure Equitable Hemophilia Treatment in Women and Girls
Hemophilia has long been associated with males, but a deeper understanding of the condition reveals that women and girls play a significant role as carriers, with a ratio of over 2.7 female carriers for every male with hemophilia.[i] Women and girls can also be patients with hemophilia. In the U.S., there are currently more than 2,700 women and girls that are enrolled in Hemophilia Treatment Centers (HTCs), which accounts for 11% of the total population receiving care at U.S HTCs.[ii] Unfortunately, gender bias in the current global healthcare landscape often results in inadequate treatment and care for women and girls with hemophilia.
One critical issue is the lack of awareness and education among health care providers regarding bleeding disorders in women and girls, leading to many being misdiagnosed or undiagnosed and resulting in serious complications, as explained by Sanofi’s Ekta Seth Chhabra, Global Research Lead, Rare and Rare Blood Disorders.
Gender bias further exacerbates the challenges faced by women and girls with hemophilia, as clinicians may mistakenly perceive women and girls as mere carriers of the defective gene and fail to recognize their own susceptibility to the condition. This biased perception can result in a dismissive attitude towards women's symptoms and a lack of appropriate care.
To ensure equitable hemophilia treatment, a shift in the healthcare system is crucial. The voices of women and girls with hemophilia must be heard and validated globally, moving beyond the current lack of awareness and stigma they face. By addressing the knowledge gaps among health care providers, raising awareness about the complexities of hemophilia in women and girls, and challenging gender biases, the gender gap can be closed, leading to more equitable treatment for women and girls with hemophilia.
Unveiling the Diagnosis Disparities: Barriers for Women and Girls with Hemophilia
Diagnosing women and girls with hemophilia presents significant challenges, as highlighted by all the speakers in the webinar. The low number of diagnosed women and girls in their respective countries was underscored by Tirsa Carcamo Bonilla, Project Lead at the Honduran Hemophilia Society, and Baiba Ziemele, Chairwoman of the Board at Latvia Hemophilia Society. With only 21 registered women with hemophilia out of a population of 8 million in Honduras, and just 3 registered women out of 122 hemophilia patients in Latvia, there is a pressing need to improve diagnosis rates.
Leveraging the power of data becomes crucial in this regard. Megan Adediran, Founder & President at the Hemophilia Foundation of Nigeria, suggests registering every daughter of a male with hemophilia and every mother of a son with hemophilia, conducting tests among family members when a male is diagnosed. This approach can lead to early detection, allowing for timely intervention and preventive care. Ziemele also emphasizes the importance of expanding the scope of diagnosis, stating: "When they diagnose a boy with hemophilia, as I understand, in Latvia they are not checking the mother and they are not checking their sisters and other family members. I think that is something that should change."
Equitable Treatment for Women and Girls with Hemophilia: Overcoming Disparities
Effective treatment for women and girls with hemophilia requires comprehensive and individualized strategies, including the establishment of multidisciplinary care teams that include not only hematologists but also gynecologists, genetic counselors and other relevant health care professionals. However, equal access to treatment remains a significant challenge. Moreover, treatment options are currently limited and inconsistent, as highlighted by Carcamo Bonilla at the Honduran Hemophilia Society, where the government is the primary supplier, yet the supply is unstable and unreliable.
Addressing social determinants of health is also crucial to ensure equitable treatment. Individuals from low socioeconomic backgrounds often face difficulties due to lack of insurance and limited access to funded treatments, as noted by Esmeralda Vazques, Lived Experience Expert at the National Hemophilia Foundation. In the United States, "a lot of the hemophilia health care treatment centers are concentrated around research institutes and large medical systems, and it's not always easily accessible for all communities," Vasquez says. Some hospital systems are recognizing these challenges and providing vouchers for transportation to facilitate access, thereby addressing the disparities that some patients might experience.
Breaking the Stigma: Addressing Emotional Needs for Women and Girls with Hemophilia
Women and girls with hemophilia and other bleeding disorders often face significant stigma, highlighting the need for increased awareness to improve their care. Educating both patients and their families about the unique needs of women and girls with hemophilia is crucial. This includes teaching self-care techniques, including the use of appropriate protective gear during physical activities and providing access to emergency treatment options.
Educating patients about bleeding disorders symptoms, including heavy menstruation and the measurement of blood loss, is crucial to empowering women and girls to take control of their health. Adediran emphasizes the need for comprehensive education. "We need to educate people. They need to know what the symptoms are, what is normal and what is not normal. They need to know about the menstrual cycle too. How do I measure my blood loss? How do I know if I'm losing too much blood? We need to educate.”
Community-based initiatives are being implemented in Nigeria to create safe spaces for discussions and support among women and girls with hemophilia. Adediran describes reaching out to churches and women's groups, acknowledging the need for privacy and comfort when discussing sensitive topics such as menstruation: "We're taking the initiative of talking to women in communities where they feel comfortable. Because talking about menstruation is not something we are always comfortable discussing in public."
Normalization of conversations surrounding women and girls with bleeding disorders is crucial to empower individuals and drive positive change. As Carcamo Bonilla highlights, "Why are these conversations important? Because you can go from having no information and denying the information and therefore pushing your treatment away, to being in a position to make change and cause change." Having these open discussions leads to acceptance and proactive steps toward improved treatment and well-being. By addressing stigma, providing education, and normalizing conversations, health care providers can better support the overall care, well-being and emotional needs of women and girls with hemophilia.
In a world where gender bias still exists, providing optimal care for women and girls with hemophilia remains a challenge. But we can make a difference. By prioritizing holistic treatment, breaking the stigma, and addressing the knowledge gaps among the community and health care providers, we can bridge the gender gap and ensure equitable hemophilia treatment for all. Join us in this effort to dismantle gender bias and make a positive impact on the lives of women and girls with hemophilia.
Experts that contributed:
- Baiba Ziemele, Chairwoman of the Board, Latvia Hemophilia Society
- Megan Adediran, Founder & President, Hemophilia Foundation of Nigeria
- Tirsa Carcamo Bonilla, Project Lead, Honduran Hemophilia Society
- Esmeralda Vazques, Lived Experience Expert, National Hemophilia Foundation
- Ekta Seth Chhabra, Global Research Lead, Rare and Rare Blood Disorders, Sanofi
- Cecile Le Camus, Head of Global Medical Affairs Hemophilia, Sanofi