When Kate Bazinsky received the call that a young man with Hemophilia had died by suicide after being denied by substance abuse and mental health treatment, she knew something had to change. In this powerful episode, Kate shares how that loss catalyzed the creation of the Bleeding Disorders Substance Use and Mental Health Access Coalition (BDSUMHAC). We explore the stigma, fear, and policy gaps that keep people with bleeding disorders from receiving the care they deserve—and the inspiring ways advocates are breaking down those barriers through data, tools, and hope.

What You’ll Learn:

Why mental health and substance use support are essential in the bleeding disorders communityThe tragic story that sparked a national movement for accessWhat BD SUMHAC uncovered through their nationwide HTC surveyHow stigma and fear create systemic barriers to careWhat self-advocates, families, and clinicians can do to access treatmentResources and action steps for creating change at every level

Episode Highlights:

00:30 – Welcome and introduction to Kate Bazinsky

01:41 – Kate’s public health background and becoming a parent advocate

03:01 – Why no experience is needed to be an effective advocate

05:11 – The story of Derek and the birth of BDSUMHAC

07:05 – National survey: 83% of HTCs report denials for inpatient care

08:16 – Fear, stigma, and confusion around infusion medication

11:05 – When people are told they're “too complicated to treat”

12:11 – Data shows the bleeding disorders community is at high risk

13:59 – Asking for help: why the care team conversation matters

15:56 – The importance of honesty in screening and care

17:36 – What gives Kate hope as a mother

18:04 – New partnership with the National Bleeding Disorders Foundation

Meet the Guest:

Kate Bazinsky is the mother of a hemophilia a patient, public health expert, and fierce advocate who chairs the Bleeding Disorders Substance Use and Mental Health Access Coalition (BD SUMHAC). With a background in health policy and a Master’s in Public Health from Johns Hopkins, Kate blends data-driven advocacy with lived experience to lead national efforts improving mental health and substance use access for people with bleeding disorders.

Tools, Frameworks, or Strategies Mentioned:

National HTC Survey on access to careSelf-advocacy scripts and resource toolkits from BD SUMHACPartnerships with HTCs and the National Bleeding Disorders FoundationHonest, early, and regular conversations with care teams

Closing Insight & CTA:

“A denial is not the end of the story—it’s the beginning of advocacy.”

If you or someone you love is navigating mental health or substance use challenges in the context of a bleeding disorder, you are not alone. Start the conversation with your care team, and explore the growing network of resources created by BD SUMHAC to help you access the support you deserve.

Resources & Links:

Access Toolkits: https://www.bdsumhac.org/patient-access-toolkitBD SUMHAC: https://www.bdsumhac.orgNational Bleeding Disorders Foundation: https://www.hemophilia.orgCoalition for Hemophilia B: https://www.hemob.orgBalancing Life’s Issues: https://balancinglifesissues.com/podcast-bli/