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Today on Beyond the Bleeds, we’re joined by Kate Bazinsky, chair of the Bleeding Disorder, Substance Use and Mental Health Access Coalition (BD SUMHAC), and Joe Hoelscher, a behavioral health specialist at the Hemophilia Outreach Center in Green Bay. Together, we shine a light on the painful and often unseen barriers faced by people with bleeding disorders when they seek inpatient mental health and substance use treatment. We discuss the origins of BD SUMHAC, the deep connections between chronic conditions, mental health, and substance use, and the urgent advocacy work happening to dismantle discrimination and secure equal access to care for the bleeding disorders community.
Kate Bazinsky brings a unique blend of lived and professional expertise to her advocacy. As the mother of two children with severe hemophilia and an accomplished health policy consultant with a decade of experience on Capitol Hill, Kate has dedicated her career to driving impactful solutions for multi-stakeholder groups. Passionate about consensus-building and deeply committed to advancing access and equity, Kate now channels her skills and compassion into leading BD SUMHAC’s national and state advocacy work.
Joe Hoelscher is a seasoned behavioral health specialist with nearly 30 years of experience working across the spectrum of mental health and substance use disorders. Currently at the Hemophilia Outreach Center in Green Bay, Joe brings a deep understanding of the unique intersections between bleeding disorders, chronic pain, and behavioral health. His wide-ranging expertise includes work with both children and adults, and he holds specialized credentials in alcohol and other drug abuse (AODA) treatment. Joe is dedicated to collaborative, holistic care, with a special focus on advocacy for those who often fall through the cracks in our healthcare system.
“What we found was that 83% of hemophilia treatment center providers who had attempted to refer their folks with bleeding disorders to inpatient or residential substance use or mental health treatment facilities had received denials.” – Kate Bazinsky
Today on Beyond the Bleeds:
- The vast majority of treatment denials for the bleeding disorders community are tied to inpatient settings—outpatient access remains relatively better, though limited for all.
- Top reasons for denial include fear of needles/infusions, medical complexity, and insurance or medication cost issues, sometimes even if the patient doesn’t require active medication.
- Mental health and substance use disorders are deeply interconnected, and people with bleeding disorders face heightened risk due to chronic pain, anxiety, and opioid prescriptions.
- Lack of education among inpatient and residential facilities fuels “front door” discrimination, as many refuse to learn what’s required for safe care.
- National surveys and advocacy have led to significant wins, including updated American Society for Addiction Medicine criteria and strengthened federal anti-discrimination rules (Section 504).
- Advocacy now occurs at local, state, and national levels, from directly educating facility staff to collaborating with lawmakers and federal agencies.
- Families, providers, and advocates can access resources, including toolkits, support networks, and public comment and engagement opportunities.
- The bleeding disorders community is encouraged to speak openly about mental health, access treatment early, and rally for policy change, because advocacy and education are for everyone.
Guest Contact Information:
Kate Bazinsky & BD SUMHAC: https://bdsumhac.org
Sign up for the newsletter, explore resources, or join advocacy initiatives and the Social Media Ambassador program.
Resources Mentioned:
- BD SUMHAC Provider & Access Toolkits: https://bdsumhac.org/resources/
- Social Media Ambassadors (sign up via BD SUMHAC site)
- National Institute on Drug Abuse (NIDA): https://nida.nih.gov
- National Institute of Mental Health (NIMH): https://nimh.nih.gov
- National Bleeding Disorders Foundation (NBDF) – Washington Days Advocacy: https://www.hemophilia.org/events/washington-days
- Hemophilia Federation of America: https://www.hemophiliafed.org
Looking for practical tips, expert advice, and a sense of community while living with or supporting someone with a bleeding disorder?
Subscribe to Beyond the Bleeds, the podcast that explores life with hemophilia, von Willebrand disease, and other rare conditions. Hosted by Heather Hansen and John Mazzariello, we bring you real stories, expert insights, and heartfelt conversations designed to help you navigate life ‘Beyond the Bleeds’.
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Know a child or teen in Wisconsin with a bleeding disorder?
Don’t miss these life-changing summer opportunities!
Camp Klotty Pine (Aug 3–8, Campbellsport): An unforgettable week of swimming, hiking, canoeing, and confidence-building for kids ages 7–15, plus self-infusion support in a fun, understanding environment.
HOC Mentorship Program (Aug 15, Appleton): A powerful day for teens and young adults to connect, grow, and talk openly with peers and mentors who get it.
Learn more about Camp Klotty Pine at glhf.org
Join the mentorship program by contacting Heather Hansen at heatherh@hocgb.org or 920-965-0606
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