Health Literacy Matters: Making Health Information Accessible for the Bleeding Disorders Community

This Health Literacy Month, we’re focusing on the essential role health literacy plays in the hemophilia and bleeding disorders community. Through our content, we aim to provide clear, accessible information to help patients and caregivers make informed decisions about their health.

What is Health Literacy?

Health literacy is the ability to find, understand, and use health information to make informed decisions about one’s care. According to the Centers for Disease Control and Prevention , nearly 9 out of 10 adults struggle to understand basic health information. For individuals managing rare conditions like hemophilia, this challenge can lead to confusion about treatments, difficulty in navigating the healthcare system, and delays in receiving appropriate care.

Health Literacy Across the U.S.

Health literacy isn’t one-size-fits-all—it varies across the U.S. based on factors like education, languages spoken, health behaviors, and even how local healthcare systems operate. In some counties, only 15% to 27% of people face challenges with health literacy, but in others, that number jumps to 36% to 59%. For individuals living with hemophilia and other bleeding disorders, these gaps in understanding can be especially tough. That’s why improving health literacy is so important—it leads to better health outcomes and more informed, confident decisions when it comes to managing care.

BloodStream's Commitment to Expanding Health Literacy

At BloodStream Media, we’re committed to improving health literacy by breaking down complex medical topics into easy-to-understand content. Whether through podcast episodes, expert interviews, or patient stories, we help bridge the knowledge gap so our community can access the care they deserve.

Featured Podcast Episodes

?? Navigating the Nightmare of Insurance

Health literacy is crucial when navigating complex insurance tactics like Alternative Funding Programs. In this episode, Zack Duffy and Roland Lamy from the Hemophilia Alliance help break down these programs, explaining their potential impact on patients with bleeding disorders. Understanding these tactics can empower you to make informed decisions about your care. We also discuss the Hemophilia Federation of America ’s Project ECHO and clear up common myths and misconceptions about Gene Therapy, ensuring you have the facts you need.

?? Watch Below or Listen Here to learn about your healthcare decisions with clear, accessible insights.

??? “The Multi-Faceted Role of HTC Social Workers”

In this episode, we explore the critical role social workers at Hemophilia Treatment Centers (HTCs) play in supporting patients. Social workers are often the bridge between patients and the healthcare system, helping them access resources, navigate insurance, and understand their treatments.

?? Watch Below or Listen Now to learn how social workers can be your best advocate in navigating your care.

?? Gene Therapy: A Whole New World for HTCs

Gene therapy is transforming care for patients and payers—but what does it mean for HTC providers? With new treatments come new challenges, and HTCs are preparing like never before. In this episode, Zack Duffy and Roland Lamy from the Hemophilia Alliance dive deep into what it takes to operationally deliver this breakthrough therapy.

?? Watch Below or Listen Here for our?insightful discussion on how HTCs are navigating the future of gene therapy

?? Flow Podcast – “Connect Your Community to Menstrual Realities”

This special episode of the Flow Podcast features hosts Jessica Richmond and Sarah Watson, LPC, CST, Sex Educator, Speaker leading a conversation about menstruation at the Hemophilia Foundation of Michigan 's Conference for Women and Teens. With personal stories from participants, this episode highlights the need for awareness, advocacy, and breaking taboos around menstrual health in the bleeding disorders community.

?? Listen Below to hear how sharing menstrual journeys is breaking barriers and building community.

How You Can Get Involved?

Share Your Story: Tell us how health literacy has impacted your journey with bleeding disorders. Tag BloodStream Media to be featured on our channels.

Let Us Know How We're Doing: Take our quick survey to share how we can improve health literacy in future episodes. Your feedback makes a difference!

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