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Women continue to feel the repercussions of the old idea that hemophilia only affects men, leading to delays in diagnosing the bleeding disorder

By Joseph Constance on Aug 8, 2024

Healthcare can fail women with hemophilia. Women continue to feel the repercussions of the old idea that hemophilia only affects men, leading to delays in diagnosing the bleeding disorder, and may suffer emotional and psychological burdens linked to their symptoms and status as carriers of the disease. The situation calls for solutions that meet the specific needs of women affected by the condition.

Women with hemophilia are a subpopulation in a rare disease but the condition still affects thousands of lives. There are more than 2,000 women with hemophilia A or B in the U.S.¹ A survey conducted by the World Federation of Hemophilia across 113 countries identified 11,700 women with the disorder.² Other women may have undiagnosed hemophilia.

Many more women and girls are genetic carriers of hemophilia. While being a carrier is different than having hemophilia, carriers may experience symptoms of hemophilia such as a heavy menstruation, anemia, and joint bleeds.³ Women with bleeding disorders, including carriers of hemophilia, have an increased risk of bleeding during pregnancy and delivery.⁴ Additionally, carriers have a 50% chance of having a child with hemophilia so these disease burdens can be compounded by the fact that they are also caregivers.⁵

All those women have needs related to the condition. There is extensive evidence that barriers to health equity are preventing those needs from being met.^6,7 Stigma creates a culture of silence among entire communities and can greatly impact the rate of diagnosis in both developing and developed countries. For women and girls with hemophilia, these challenges are compounded by gender disparities that can prevent testing, accurate diagnosis, and access to optimal care.

Seeking to find solutions, Reuters Events partnered with Sanofi to organize the Hemophilia Changemakers Hackathon on June 13, 2024. The event brought together 50+ changemakers from across the globe to find tangible, targeted, and implementable solutions to stigma-related diagnosis and treatment barriers. Working in small teams, advocacy leaders conceptualized and built solutions that could drastically advance diagnosis rates and quality of care for women and girls with bleeding disorders in all regions by addressing key challenges.

Want to gain more insights like this, or join future Hemophilia Changemakers events? Register your interest in the series here

The top 3 challenges for women

Barriers to diagnosis and optimal care

Historically, hemophilia was seen as a disease that only affected men because of its X-linked inheritance. Cases in women have disproved that belief, but the historical view that the disease only affects men is pervasive in many parts of the world and continues to affect access to care.

Megan Adediran, Executive Director, Haemophilia Foundation of Nigeria, discussed her own experience to show how gender shapes diagnosis. Adediran had hemophilia symptoms, such as bruises, but was never tested for the condition, despite her many male relatives, including two sons, being diagnosed. Eventually, Adediran was able to arrange to get herself tested and was diagnosed with mild hemophilia.

“So many women face this barrier of diagnosis, either because they are overwhelmed with taking care of their children or because the doctors are not asking questions,” Adediran said.

Gynecological and reproductive health

Women with hemophilia and similar disorders may present with heavy or prolonged menstrual bleeding, a condition known medically as menorrhagia. Physicians often identify fibroids, rather than a bleeding disorder, as the likely cause of menorrhagia. Adediran discussed a woman who had several surgeries, which failed to normalize menstrual bleeding, before an alternative diagnosis was considered.

The failure to diagnose bleeding conditions can have fatal consequences. Postpartum hemorrhage is one of the main causes of maternal death in Nigeria, Adediran said, and women with bleeding disorders are at higher risk. Diagnosing more cases of hemophilia in women, and doing so before the individuals have children, could therefore improve maternal health outcomes. 

Emotional and psychological impacts

Delayed diagnoses and misinformation can cause emotional and psychological impacts. People in Nigeria may think the woman is at fault for having a child with hemophilia, Adediran said, and that perception can burden mothers and strain family and social relationships. Believing they caused their child’s health problems, women are left with guilt and trauma, Adediran said.

Those women may also be living with undiagnosed hemophilia. The challenges are particularly acute for women living in societies where they are unable to discuss their menorrhagia. “They are living in denial, they are living in pain,” Adediran said.

Want to gain more insights like this, or join future Hemophilia Changemakers events? Register your interest in the series here

What organizations are doing today

Groups such as the Haemophilia Foundation of Nigeria are working to address the challenges. Adediran gave three examples of initiatives to help women in Nigeria. One programme is seeking to ensure women can be part of the hemophilia community, regardless of their culture. Some cultures prevent women from attending meetings with men, thus preventing them from engaging with the wider hemophilia community.

The Haemophilia Foundation of Nigeria responded by creating a separate group for women, including the mothers, sisters, and wives of men with hemophilia and females with a suspected or diagnosed bleeding disorder. The goal is to create an environment in which women can talk freely.

“If we create a safe environment, women will come out. If women are not judged, they will come out. If we don't see it as a taboo to talk about menstruation, women will come out,” Adediran said. “It's not enough to diagnose. They need to know there's someone there who is ready to listen and ready to give them good advice and emotional support. If you show them the support, more women will come out.”

Adediran also discussed the foundation’s work to engage the daughters of men with hemophilia. Some of the women may have hemophilia symptoms. All the women could be carriers of the genes that cause the bleeding disorder. Bringing the women together, through a WhatsApp group and online meetings, is another way to create a safe space, foster communication, and help people understand themselves.

The third initiative highlighted by Adediran is designed to give women advocacy and leadership roles in the Haemophilia Foundation of Nigeria. A woman with Von Willebrand disease, a bleeding disorder, is leading a regional chapter of the foundation and there is a push to show leadership and advocacy roles are open to everyone. 

Hackathon finds new solutions to old problems

The online Hackathon event brought people from around the world together to generate ideas to help overcome the barriers to diagnosis and care. Adediran briefed the attendees on the objective before they broke up into five teams to work together to come up with solutions.

“I want us to create a solution that can break down the stigmas and empower women and girls with hemophilia to advocate for themselves,” Adediran said. “They need to advocate for themselves in the doctor's office, to advocate for themselves in their families, to advocate for themselves in society, at the workplace.”

Team 1

Chris Bombardier, Executive Director of Save One Life and Sanofi’s Nikky Ugwuoke led the first team. The team proposed working closely with doctors for direction, engaging the community to make men more aware of women’s issues, and training female ambassadors to go to events and spread the word.

Team 2

The second team was led by Tirsa Carcamo Bonilla, Project Leader at the Honduran Hemophilia Society, and Sanofi’s Meagan Perry. The team proposed a holistic approach intended to address the full spectrum of hemophilia needs. Specific actions included identifying “evidence-backed, powerful testimonials,” running a mentor program, and garnering male endorsements for the campaign.

Team 3

James Kago, a Member of the Board of Advisors at the Kenya Haemophilia Association, and Sanofi’s Kim Isenberg oversaw the third team. Aiming to address financial, cultural, and diagnostic challenges, the team proposed creating a team of “Bleeding Champions” and holding virtual meetings to drive changes in government policy.

Team 4

Dawn Rotellini, Chief Operations Officer at the National Bleeding Disorder Foundation, and Sanofi’s Sandra Casiano led a team that proposed ways to educate people about what is normal bleeding. The team proposed adapting 7-2-1, an educational tool that explains the signs of a heavy period such as cycles lasting longer than seven days, to different countries by using language and pictures that are appropriate for the targeted culture.

Team 5

The fifth team was led by Trudy Nyakambangwe, Founder of Child and Youth Care in Zimbabwe, and Sanofi’s Gregory Fagan. The team outlined a three-pronged plan covering educating menstrual bleeding NGOs about bleeding disorders, increasing access to diagnostic tests and registry signups for women, and a global awareness campaign including education of treaters and female-focused congresses.

The most tangible, implementable “hack”

Adediran and Cesar Garrido, President of the World Federation of Hemophilia, chose team 4’s solution as the most tangible, implementable “hack.” The team presented a relatively detailed plan that addressed opportunities to gather resources from organizations such as the European Haemophilia Consortium and spread the message by finding “champions” and training them to tell their stories via social media.

The proposal also addressed funding, noting the cost of activities such as meeting with governments and printing fliers, and suggested leveraging the bleeding disorder community and potential partners such as pharmaceutical companies to raise money.

Rotellini’s and Casiano team outlined various ways to assess whether the money is making a difference. Social media analytics could provide one measure of the effectiveness of the campaign. The team also proposed holding a day of testing and tracking the number of people who attend and monitoring how many individuals contact the Hemophilia Foundation of Nigeria as a result of the campaign. 

The international collaborations fostered by the Hackathon show people around the world have similar problems related to hemophilia. By working together, the experts came up with ways to improve the situation that can be tailored to different healthcare systems and cultures. The next step is to put ideas into action to improve the lives of women affected by hemophilia.

Want to gain more insights like this, or join future Hemophilia Changemakers events? Register your interest in the series here

References

1. CDC. Factor VIII and Factor IX. Centers for Disease Control and Prevention. Accessed 19 July 2024. https://archive.cdc.gov/www_cdc_gov/ncbddd/hemophilia/communitycounts/da... (2024).
2. World Federation of Hemophilia Women and Girls with Hemophilia 2023. Accessed 19 July 2024. https://www1.wfh.org/publications/files/pdf-2342.pdf
3. World Federation of Hemophilia Report on the Annual Global Survey 2022. Accessed 19 July 2024. https://www1.wfh.org/publications/files/pdf-2399.pdf.
4. CDC. How Hemophilia Is Inherited. Centers for Disease Control and Prevention. Accessed 19 July 2024. https://www.cdc.gov/hemophilia/testing/how-hemophilia-is-inherited.html
5. Janbain, M. & Kouides, P. ‘Managing Pregnant Women with Hemophilia and von Willebrand Disease: How Do We Provide Optimum Care and Prevent Complications?’ Int J. Women’s Health. 14, 1307–1313 (2022).
6. World Federation of Hemophilia Women and Girls with Hemophilia 2023. Accessed 19 July 2024. https://www1.wfh.org/publications/files/pdf-2342.pdf
7. Arya, S. et al. ‘They don’t really take my bleeds seriously’: Barriers to care for women with inherited bleeding disorders. J. Thromb. Haemost. 19, 1506–1514 (2021).