Delivering on its commitment to achieving health equity for underserved and underrepresented populations with bleeding disorders, the Hemophilia Federation of America proudly held its first-ever Black Voices Summit (BVS); an in-person event for Black & African-American members of the bleeding disorders community from all across the US. At this event, HFA and the participants built dialogue around personal experiences related to known healthcare access barriers to determine both practical and policy-focused solutions.
The Summit was a small and intimate affair with around 40 community members selected through an open application process. We selected participants through an application process that was posted across our multiple social media channels and regularly scheduled e-mails & newsletters. The window for submissions was one month and all applicants were notified of the decision regarding their application via e-mail. We were incredibly excited that for the 40 open seats, we received a total of 90 applications!
The event was held in the beautiful city of Greenville, SC, during the weekend of July 12 & 13. To ensure that the community voice was involved in the planning of this event, HFA recruited a small group of Black & African American patients/caregivers from different parts of the US to be part of an Advisory Committee to help plan this Summit with purpose and intention. The Black Voices Summit would not have been possible without the generous support from our industry partners: Takeda, Sanofi, Genentech, and Bayer.
The Summit formally kicked off on Saturday evening with a Welcome Reception & Dinner to give the participants a chance to connect with each other in a relaxed setting and enjoy the great food that South Carolina has to offer. Earlier in the day, HFA held individual interviews with participants who were interested in sharing their insights into key aspects of their life and living with and/or caring for someone with a bleeding disorder.
These interviews, known as our “Community Chronicles”, are vital to ensuring that HFA knows what is going on in the community and to share the stories of community members to raise awareness and advocate for change. These videos are used as research materials, references, and data to inform HFA’s future activities. The videos will also be uploaded across our social media platforms to elevate their stories nationwide.
| Time | Session |
|---|---|
| 8:00 am – 9:00 am | Breakfast & Introductions |
| 9:00 am – 10:00 am | Healthcare While Black: Navigating Bias and Barriers |
| 10:00 am – 11:00 am | Medical Mistrust & Self-Advocacy |
| 11:00 am – 11:15 am | Break |
| 11:15 am – 12:00 pm | Financial Barriers to Access & Obstacles in Navigating Health Insurance |
| 12:00 pm – 1:00 pm | Lunch |
| 1:00 pm – 2:30 pm | Community Empowerment Through Storytelling |
| 2:30 pm – 3:00 pm | Collective Solutions & Conclusions |
On Sunday, HFA held a full day’s worth of discussions on topics including Healthcare While Black – Navigating Bias and Barriers, Medical Mistrust & Self-Advocacy, and Financial Barriers to Access & Obstacles in Navigating Health Insurance in which we heard deeply personal experiences such as:
“I’m going to have to put up with this (the risk and side effects when not getting factor) – job, medical, etc. – I’m going to have to just tough it out. It’s not fair, but it’s how it is – that’s the Black experience, and happens in hemophilia so often” – M.
“I’m 54 years old. I have no living parents or grandparents, and 11 of my aunts and uncles are deceased. The passion I have for advocacy is because it’s life and death for me. I know I have to continue to do it even though it is exhausting.” – C.
“When he (my son) went to get the factor, he had to talk to the specialty pharmacy…so when he called them, they said the cost was going to be $5000 a month. Do you want to make the payment plan? So my son asked them, are you crazy?” – J.
Our last session, entitled Community Empowerment Through Storytelling, was a workshop in which we had participants develop their “elevator pitch” to describe their bleeding disorder and experience in a short and concise manner that could be used in a variety of scenarios such as when speaking with healthcare providers who are not familiar with bleeding disorders, discussions with administrators regarding accommodations at employment/school accommodations. It was a powerful workshop with many of the participants formally sharing their story for the first time in a concise, advocacy-driven way.
We closed out by asking “What’s Next” – not just for HFA but also for the participants in how they would go back to their local communities. Some of the feedback we heard loud and clear was:
“It’s so important that we set the standard for the care that we deserve” – A.
“This event is something we must continue. I hope that (sponsors) know that it’s not just numbers, it’s people and experiences behind those numbers. We are the beginning of that change – through our voices, sharing our stories, and putting action to the work going forward.” – J.
“This is why we need a room of our own. Not because we’re anti-anyone—but because we’re pro-healing, pro-truth, and pro-survival.” – Anonymous
“So when we gather as a community, it’s not to exclude others—it’s to finally be seen, to heal, and to tell the truth without filtering ourselves for comfort. It’s about speaking freely, without code-switching or having to explain why something hurt us in the first place.” – T.
The Black Voices Summit was, in a sense, a “reverse” education event in which the participants were “presenters” educating HFA on the unmet needs and unheard/unseen obstacles within the Black & African American patient community in bleeding disorders. This was done by participants candidly sharing lived experiences on a variety of different topics with the goal of helping HFA develop the framework to address these issues in line with its mission. We greatly appreciate the trust that the participants placed in us, allowing us to utilize their voices in our work advocating for change and improving the lives of all those impacted by a bleeding disorder.
In the days following the event, we sent out a Post-Event Evaluation Form to all the participants to hear their overall feedback and thoughts about the program; below are the results and notable responses:
Overall Satisfaction
88% of respondents reported being ‘Extremely Satisfied’ with the Summit. Participants praised the event as a safe space for connection and shared experiences.
Community Connection & Voice
96% of respondents felt their voices were completely heard. 100% of the respondents connected with peers or groups they plan to follow up with after the Summit.
Willingness to Stay Engaged
100% of respondents are likely to recommend the Summit to others. 96% expressed interest in future activities such as working groups, advisory panels, and storytelling projects.
Full Anonymized Participant Comments
- “Staff was great. Great to see the President of HFA showing interest in our struggles.”
- “Hearing the experiences of the women in attendance was very concerning…”
- “The storytelling session should be earlier because it was so impactful.”
- “Quarterly meetings and resource sheets would help us sustain the momentum.”
- “More presence of healthcare professionals would make the event more impactful.”
- “I felt heard, seen, and appreciated in this safe space.”
- “Thank you for providing this space for Black voices.”
With that in mind, we know that this cannot be a one-time event, so we are excited to announce that we will be holding The Black Voices Summit again in 2026! We know there are so many more stories to be shared, and we are looking forward to bringing this community back together!
Thank you to the 2025 Black Voices Summit Advisory Committee Members
- Jecorei Lyons, North Carolina, Patient Advocate
- Renita Johnson, South Carolina, HFA Board of Directors Member
- Ashley Lacy, Tennessee, HFA Board of Directors Member
- Jerome Bell, Texas, Texas Central Bleeding Disorders Board of Directors – President
- Edwin Mitchell – Patient Advocate, South Carolina
- Kailey Townsend – Washington, D.C, HFA Board of Directors Member
Thank you to our Sponsors
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