Mild Matters Physician Forum 

HFA brings physicians together to address diagnosis and treatment of mild bleeding disorders.

By G Shellye Horowitz, former HFA Director of Education. Photography by Bethany Swain

When Hemophilia Federation of America chose to support an educational initiative to expand the reach of a program assisting those struggling to obtain a diagnosis and care for their bleeding disorder, it became clear that females with bleeding disorders needed more support—and they were not alone. Males with mild bleeding disorders and children (boys and girls) with mild bleeding disorders were also met with roadblocks to diagnosis and treatment. 

G Shellye Horowitz, HFA’s former Director of Education, then coined the phrase “Mild Matters, because Milds Matter,” and HFA’s Mild Matters initiative was created to help mild patients find equity within the bleeding disorders space. The popularity of Mild Matters has grown. 

Discrepancies Addressed

As people with mild bleeding disorders were empowered with knowledge and tools to be strong self-advocates, a trend emerged: individuals were not always met with support when they approached Hemophilia Treatment Centers (HTCs) to strengthen their care. Discrepancies in the way people with mild bleeding disorders were diagnosed, labeled and treated became a common theme. 

HFA realized patient empowerment could not operate in a vacuum, so staff worked to bridge the gap between patient advocacy and HTC providers by engaging HTC hematologists in critical diagnostic and treatment conversations. 

Partnering with Hemophilia Alliance and the Foundation for Women and Girls with Blood Disorders, the Mild Matters Physician Forum was held in February as an opportunity to share with clinicians the feedback gathered at HFA’s Mild Matters events, which are designed for patients. The Forum brought together 25 HTC hematologists from across the U.S. and Puerto Rico. Feedback presented to the physicians at the Forum came from:

• HFA’s Mild Matters Webinar, March 2022: Presentation on the challenges faced by people with mild bleeding disorders, how to recognize symptoms in milds and seek care. Attendees requested a continued focus on mild bleeding disorders. 
• HFA’s Annual Symposium, 2022: HFA’s first Mild Matters rap session. Patients shared the struggles they continue to face when seeking diagnosis and appropriate care, and appreciated the space to connect and learn. 
• Mild Matters Summit, November 2022: The first Summit offered an opportunity to identify
• unmet needs and express hopes for the evolution
• of treatment. 
• HFA’s Annual Symposium, 2023: Multiple well-attended sessions addressed treatment needs, plus a rap session dedicated to discussing ongoing needs and concerns of the mild patient community. 
• Mild Matters Summit, November 2023: With more
• than twice the attendance as the first Summit (plus more than 100 applicants who had to be turned away), it demonstrated the high interest and need from the mild community. 

The disparities in diagnosis and care of people with mild bleeding disorders in comparison to those with labels of moderate or severe disease were evident both in the literature and in the discrepant ways in which milds reported being cared for at HTCs. The lack of standardization of care for milds was the top concern expressed by those who attended all Mild Matters events.

Patient stories were filmed by talented videographer and photographer Bethany Swain, who captured the struggles, fears and victories of patients at the Summit. The videos were shared with physicians to help them understand the day-to-day struggles individuals face. 

The Physician Forum provided an opportunity to acknowledge barriers to obtaining appropriate diagnosis and treatment for individuals with mild diagnoses. By identifying the barriers, hematologists can discuss ways they can collaborate as peers and patients to appropriately expand access to diagnosis and treatment.

Informed by concerns voiced by patients, HFA, HA and FWGBD created a forum for peer-led sessions to establish a common language. Two main topics were addressed during the physician breakout group sessions: 

1. Timing of testing of infant boys and infant girls at risk of inheriting a hemophilia genotype.
2. Practices for treating people with mild bleeding disorders.

The physicians came to a consensus on the importance of testing both infant boys and infant girls at risk for inheriting hemophilia as early as possible. This is to ensure all infants are on the radar for treatment at any point in their lives, including medical emergencies that can happen at any age. The physicians also discussed the need to continue to gather information and documentation on patient bleeding issues because genotypes and phenotypes do not always correlate in mild bleeding disorders. Every physician spoke of the value of continuing the conversation. There is a small group of physicians currently working on a summary of proceedings from the event so the information discussed, and conclusions drawn can be shared with a wider audience of HTC professionals. 

Thank you to event partners Hemophilia Alliance and the Foundation for Women and Girls with Blood Disorders and the hematologists who cleared their schedules and dedicated time to travel and engage in these conversations.