Beyond the Bleeds

Hemophilia Outreach Center
  • 5.0 (6)
  • MEDICINE
  • UPDATED BIWEEKLY

Beyond the Bleeds is your go-to podcast for navigating life with bleeding disorders like hemophilia, von Willebrand disease, and more. Each episode brings expert insights, inspiring personal stories, and practical advice for managing these conditions. Whether you’re living with a bleeding disorder or supporting someone who is, this podcast offers support, education, and a sense of community. Join us as we explore the challenges, triumphs, and innovations in care. For more resources, visit hemophiliaoutreach.org.

  1. Real Family Perspectives on Treating Bleeding Disorders with Inhibitors with Andrea Buxton & Kristy Schiffer Part II

    12/22/2025

    Real Family Perspectives on Treating Bleeding Disorders with Inhibitors with Andrea Buxton & Kristy Schiffer Part II

    Today on Beyond the Bleeds, we’re again joined by Andrea Buxton and Kristy Schiffer for part two of this heartfelt exploration of family life with a child facing an inhibitor diagnosis. Together, we dive deep into the emotional and practical realities of daily infusions, coping with medical routines, and the unwavering strength required to navigate uncertainty—especially when medical needs so impact childhood and parenting. From the chaos of nightly infusions to developing nursing skills on the fly, we open up about growing as parents, partners, and caregivers, and the importance of leaning on support systems when life feels completely out of control. Kristy Schiffer is a devoted mother and passionate advocate for her family. With her vivid storytelling and honesty, she illuminates the challenges and triumphs of raising her son William, who requires regular infusions due to an inhibitor. Andrea Buxton serves as the nurse practitioner and clinical director at the Hemophilia Outreach Center (HOC). With her depth of experience treating inherited bleeding disorders, Andrea is known for combining her clinical expertise with an ability to translate complex medical topics into practical advice for families. Her advocacy and leadership have improved protocols and advanced support for patients confronting inhibitors and the evolving treatments in hemophilia care. “As a parent, you want to think your kid trusts you 100% no matter what … but that’s just not how their brains work.” ~Kristy Schiffer Today on Beyond the Bleeds: Building a nightly routine for infusions is a significant adjustment, often requiring both parents to work together and improvise under pressure. Children adapt remarkably to medical routines, sometimes not remembering life any other way—but for parents, the emotional impact persists. Infusion procedures can be overwhelming, and practicing on dolls is very different from handling a real, squirming child. It’s common for parents to feel powerless or worry their child doesn’t trust them, especially during physically and emotionally challenging moments. Support from family, friends, and coworkers is crucial; grandparents and close contacts often help with logistics and emotional support. Connecting with hemophilia treatment centers (HTCs) provides essential resources, information, and a sense of community that’s invaluable for families. Handling the diagnosis and treatment process is not about mastering everything at once, but facing one moment at a time and letting go of the need for control. It’s okay, and necessary, to rely on others, accept support, and step away when things feel overwhelming. 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. Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer The post Real Family Perspectives on Treating Bleeding Disorders with Inhibitors with Andrea Buxton & Kristy Schiffer Part II appeared first on Hemophilia Outreach Center.

    17 min
  2. Real Family Perspectives on Treating Bleeding Disorders with Inhibitors with Andrea Buxton & Kristy Schiffer Part I

    12/08/2025

    Real Family Perspectives on Treating Bleeding Disorders with Inhibitors with Andrea Buxton & Kristy Schiffer Part I

    Today on Beyond the Bleeds, we sit down with Andrea Buxton and Kristy Schiffer to explore the world of inhibitors in bleeding disorders. We unravel what inhibitors are, why they develop, who’s most at risk, and the profound impact these immune system complications have on treatment, families, and daily life. Our guests share not just the science but the real-world journey, filled with challenges, advocacy, and breakthroughs in care for children like Kristy’s son navigating severe hemophilia and inhibitors. Andrea Buxton serves as the nurse practitioner and clinical director at the Hemophilia Outreach Center (HOC). With her depth of experience treating inherited bleeding disorders, Andrea is known for combining her clinical expertise with an ability to translate complex medical topics into practical advice for families. Her advocacy and leadership have improved protocols and advanced support for patients confronting inhibitors and the evolving treatments in hemophilia care. “Essentially, when a patient is born with severe hemophilia…their body is not producing a normal level of the clotting protein, Factor VIII or Factor IX.” ~Andrea Buxton Today on Beyond the Bleeds: Inhibitors develop when the body’s immune system responds to infused clotting factor proteins as foreign substances and creates antibodies against them. Severe hemophilia patients are at the highest risk for developing inhibitors, especially those with no naturally occurring Factor VIII or IX. Family history matters, but about 30% of severe hemophilia mutations are spontaneous and undetected until a major bleed occurs. Signs of an inhibitor may include a patient not responding to standard factor treatment and experiencing breakthrough bleeds; regular testing is crucial. Treatment changes drastically in the presence of an inhibitor, often requiring expensive bypassing agents like Novo 7 every two hours. Hemlibra and new rebalancing agents have transformed preventative care but don’t directly treat acute bleeds; bypassing agents remain essential for emergencies. Immune Tolerance Induction (ITI) involves overwhelming the immune system with high daily doses of factor to “teach” the body to accept it, typically requiring a port for infusions. Families often must advocate fiercely for answers, persistence matters, and connecting with specialized centers leads to better outcomes and support. 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. Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer The post Real Family Perspectives on Treating Bleeding Disorders with Inhibitors with Andrea Buxton & Kristy Schiffer Part I appeared first on Hemophilia Outreach Center.

    33 min
  3. Growing Community and Hope at the National Bleeding Disorder Foundation Conference with Stephanie Paap

    11/24/2025

    Growing Community and Hope at the National Bleeding Disorder Foundation Conference with Stephanie Paap

    Today on Beyond the Bleeds, we sit down with Stephanie Paap to delve into the lived experience of attending the National Bleeding Disorder Foundation’s annual conference. Together, we journey through the unique considerations of traveling with a bleeding disorder, and the powerful impact of connection, education, and advocacy at a national gathering. We talk honestly about preparing for travel, managing care for a family with Von Willebrand’s disease, and how conferences like NBDF foster hope and community for patients and caregivers alike. Stephanie Paap is a Green Bay native, long-time member of the Hemophilia Outreach Center, and an active parent-advocate for her two daughters, who are also diagnosed with Von Willebrand’s disease. With deep generational ties to the bleeding disorder community, Stephanie’s perspective is shaped by both personal experience and her commitment to supporting the next generation. Her story highlights the importance of preparedness, advocacy, and the profound reassurance found in connecting with others who truly understand the journey. “I really encourage you to lean on your community, make use of your resources, and always keep mental health at the forefront of your journey.” ~Stephanie Paap Today on Beyond the Bleeds: Attending a national conference can provide a powerful sense of community and support, especially for rare disorders like Von Willebrand’s. Preparation and advocacy are essential when traveling with bleeding disorder medications, always carry a travel letter and keep supplies close. Conference roundtables, particularly disorder-specific ones, offer invaluable peer learning, shared understanding, and mental health support. Kids benefit from attending these conferences too, making connections with others their age fosters openness, confidence, and lifelong friendships. The progress in treatment options and research brings renewed hope, especially for families managing chronic disorders. Knowing local medical facilities, insurance coverage, and preparing for emergencies before travel can ease stress and support safety. Conference environments, filled with inclusiveness, openness, and safe spaces, empower attendees to share and listen to each other’s journeys. Investing time and energy in educational and community events like NBDF’s conference enriches both patients’ and caregivers’ lives, inspiring advocacy and resilience. Resources Mentioned: National Bleeding Disorder Foundation (NBDF):https://www.hemophilia.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. Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer Don’t miss the Hemophilia Outreach Center’s Winter Education Program!We invite you to join us on Saturday, December 6th, 2025 at the Oneida Hotel in Green Bay for a day filled with community, education, and celebration. This special event will feature expert presentations and interactive sessions designed to support and empower patients and caregivers. Attendees will also enjoy a delicious lunch, opportunities to connect with others in the bleeding disorder community, and a variety of activities that make learning fun and engaging. Families are encouraged to bring their children for kid-friendly activities, including a memorable visit from Santa and Mrs. Claus. Registration is quick and easy at hemophiliaoutreach.org/eventsBusinesses interested in making an impact can support the event by donating raffle items that help raise funds for patients living with bleeding disorders.To contribute, please contact Heather at heatherh@hogb.org The post Growing Community and Hope at the National Bleeding Disorder Foundation Conference with Stephanie Paap appeared first on Hemophilia Outreach Center.

    25 min
  4. The Impact of Physical Therapy on Bleeding Disorder Patients with Dr. Brightyn Handrich

    11/10/2025

    The Impact of Physical Therapy on Bleeding Disorder Patients with Dr. Brightyn Handrich

    Today on Beyond the Bleeds, we sit down with Dr. Brightyn Handrich, DPT, to unravel the essential role of physical therapy in the care of patients with bleeding disorders. We examine how physical therapy fits into the comprehensive model at the Hemophilia Outreach Center in Green Bay, explore strategies for injury prevention across different age groups, and discuss how education and tailored interventions can promote joint health and enhance quality of life in this unique community. Dr. Brightyn Handrich is a physical therapist at the Hemophilia Outreach Center in Green Bay, Wisconsin. As a former gymnast with firsthand experience navigating sports injuries, Brightyn made a natural transition into physical therapy, motivated by her passion for exercise and a family history that guided her career path. Her expertise centers on evaluating and treating joint and muscle issues for individuals with bleeding disorders, empowering patients of all ages to maintain mobility and function through evidence-based techniques and movement education. “Your why has to be a lot stronger than your excuses.” ~ Dr. Brightyn Handrich Today on Beyond the Bleeds: Physical therapy is crucial for bleeding disorder patients due to the prevalence of joint issues and pain, which impact daily function, employment, family life, and even mental health. Education is at the heart of physical therapy, helping patients better understand their joint health, injury mechanisms, and preventive strategies. Annual and biannual evaluations allow physical therapists to proactively detect and address minor joint changes before they escalate into major problems. Treatment approaches are highly individualized for pediatric, adult, and older adult patients, reflecting medical advancements and differing levels of joint health. Physical therapists collaborate with hematologists, nursing teams, and families to customize plans that align with sports participation, medication regimens, and patients’ day-to-day activities. Safe movement education and sports guidance empower children with bleeding disorders to participate safely in activities, helping families navigate NVDF’s risk-ranked sports list. In older adults, physical therapy focuses on modifying movement, managing pain, and stabilizing joints, while acknowledging that major joint repair isn’t possible, preservation and adaptation take priority. Barriers to access and adherence include geographic limitations and patient motivation; focusing on the “why” and making education central helps overcome these challenges. 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. Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer Don’t miss the Hemophilia Outreach Center’s Winter Education Program!We invite you to join us on Saturday, December 6th, 2025, at the Oneida Hotel in Green Bay for a day filled with community, education, and celebration. This special event will feature expert presentations and interactive sessions designed to support and empower patients and caregivers. Attendees will also enjoy a delicious lunch, opportunities to connect with others in the bleeding disorder community, and a variety of activities that make learning fun and engaging. Families are encouraged to bring their children for kid-friendly activities, including a memorable visit from Santa and Mrs. Claus. Registration is quick and easy at hemophiliaoutreach.org/eventsBusinesses interested in making an impact can support the event by donating raffle items that help raise funds for patients living with bleeding disorders.To contribute, please get in touch with Heather at heatherh@hogb.org The post The Impact of Physical Therapy on Bleeding Disorder Patients with Dr. Brightyn Handrich appeared first on Hemophilia Outreach Center.

    23 min
  5. From Bleeds to Birdies with Golf Pro Perry Parker

    10/27/2025

    From Bleeds to Birdies with Golf Pro Perry Parker

    Today on Beyond the Bleeds, Heather and John welcome Perry Parker, professional golfer and passionate advocate for the bleeding disorder community. We dive into Perry’s journey from childhood hemophilia diagnosis to his career as a touring golf professional, discussing how resilience, preparation, and a supportive family helped him overcome adversity. Perry shares lessons learned both on and off the course, insights into managing hemophilia while living an active life, and the evolution of community support for bleeding disorders. Perry Parker lives in Laguna Niguel, California, and teaches golf at Arroyo Trabuco in Mission Viejo. He’s been competing on the Australian Legends Tour, with recent appearances in the British Senior Open, European Tour, and U.S. Senior Open. Diagnosed as a baby with moderate hemophilia A, Perry found empowerment through physical activity and advocacy, co-founding the Junior National Championship for kids with bleeding disorders, and engaging in educational clinics and fundraising events worldwide. “My proudest moments as a pro athlete with a bleeding disorder? Competing for nearly forty years straight, that’s been amazing.” ~Perry Parker Today on Beyond the Bleeds: Perry’s hemophilia diagnosis led to early challenges, but his family’s support helped him safely pursue sports and discover golf at age nine. Physical fitness, stretching, and preparation have been keys to Perry’s athletic longevity and resilience. Finding golf provided Perry a sense of hope, competition, and joy with minimal risk for bleeds and injuries. Perry teaches that being physically active, when done safely, is vital for both physical and mental well-being. He co-created the Junior National Championship, the first national sports event for youth with bleeding disorders, now featuring four sports. Through clinics and mentorship, Perry empowers kids and families to safely try new athletic activities and build confidence. The bleeding disorder community has evolved from isolation and negativity to positivity, advocacy, and improved treatments. Guest Contact Information: Perry Parker:Website: perryparker.comInstagram: @PerryP14Facebook: Perry Parker | Perry Parker Golf 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. Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer Don’t miss the Hemophilia Outreach Center’s Winter Education Program!We invite you to join us on Saturday, December 6th, 2025, at the Oneida Hotel in Green Bay for a day filled with community, education, and celebration. This special event will feature expert presentations and interactive sessions designed to support and empower patients and caregivers. Attendees will also enjoy a delicious lunch, opportunities to connect with others in the bleeding disorder community, and a variety of activities that make learning fun and engaging. Families are encouraged to bring their children for kid-friendly activities, including a memorable visit from Santa and Mrs. Claus. Registration is quick and easy at hemophiliaoutreach.org/eventsBusinesses interested in making an impact can support the event by donating raffle items that help raise funds for patients living with bleeding disorders.To contribute, please contact Heather at heatherh@hogb.org The post From Bleeds to Birdies with Golf Pro Perry Parker appeared first on Hemophilia Outreach Center.

    32 min
  6. The Power of Mentorship in the Bleeding Disorders Community with Xavier Krueger & Kevin Leurquin

    10/13/2025

    The Power of Mentorship in the Bleeding Disorders Community with Xavier Krueger & Kevin Leurquin

    Today on Beyond the Bleeds, we welcome Xavier Krueger and Kevin Leurquin, two amazing members of the bleeding disorders community in Northeast Wisconsin, for an honest and uplifting conversation about the Hemophilia Outreach Center’s mentorship program. Together, we delve into what it means to connect older teens and adults with younger individuals who are navigating life with hemophilia and other bleeding disorders. We share stories about making lasting friendships, building confidence, and overcoming challenges, all while highlighting the profound impact of these supportive relationships. Xavier Krueger is a vibrant 15-year-old living with severe factor VII deficiency. A passionate singer and theater lover, Xavier has been deeply involved with the hemophilia community from a young age—advocating for others, attending Camp Klotty Pine, and participating in the mentorship program both as a mentee and as a budding future leader. Kevin Leurquin, a fitness enthusiast from Green Bay with mild to moderate hemophilia A, is an advocate and entrepreneur known for his resilience, generosity, and commitment to giving back. Kevin’s life experiences, including conquering personal obstacles and running his own food truck, fuel his dedication to guiding younger members of the community as a mentor. “We can change the narrative of hemophilia and our bleeding disorder by strengthening the community and the conversations we have together.”  ~Kevin Leurquin This Week On Beyond The Bleeds: The Hemophilia Outreach Center’s mentorship program pairs experienced community members with youth for a day of training, conversation, and fun activities. Mentees gain invaluable confidence and learn to communicate about their bleeding disorders in a supportive environment. Mentors find personal fulfillment in sharing their life lessons and seeing mentees grow and thrive. The program fosters genuine connections among people living with rare bleeding disorders, breaking the sense of isolation. Activities like exploring Lambeau Field and completing ropes courses create vibrant settings for learning and bonding. Mentees develop vital social skills, self-advocacy, and leadership abilities that extend beyond the community of individuals with bleeding disorders. Mentors model resilience and honest decision-making, demonstrating that challenges can be turned into strengths. 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.” Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer Don’t miss the Hemophilia Outreach Center’s Winter Education Program!We invite you to join us on Saturday, December 6th, 2025, at the Oneida Hotel in Green Bay for a day filled with community, education, and celebration. This special event will feature expert presentations and interactive sessions designed to support and empower patients and caregivers. Attendees will also enjoy a delicious lunch, opportunities to connect with others in the bleeding disorder community, and a variety of activities that make learning fun and engaging. Families are encouraged to bring their children for kid-friendly activities, including a memorable visit from Santa and Mrs. Claus. Registration is quick and easy at hemophiliaoutreach.org/eventsBusinesses interested in making an impact can support the event by donating raffle items that help raise funds for patients living with bleeding disorders.To contribute, please contact Heather at heatherh@hogb.org The post The Power of Mentorship in the Bleeding Disorders Community with Xavier Krueger & Kevin Leurquin appeared first on Hemophilia Outreach Center.

    27 min
  7. Improving Care through Trauma-Informed Practices in Hemophilia Clinics with Amy Wilson

    09/29/2025

    Improving Care through Trauma-Informed Practices in Hemophilia Clinics with Amy Wilson

    Today on Beyond the Bleeds, Heather and I welcome Amy Wilson, clinical social worker at the Center for Bleeding and Clotting Disorders at M Health Fairview in Minneapolis, Minnesota. We discuss the prevalence and impact of PTSD in the bleeding disorder community, the unique forms of trauma patients experience, and actionable strategies for providing trauma-informed care. Amy shares insights from her groundbreaking multicenter study, explains how trauma manifests for those with chronic conditions, and emphasizes the essential role of comprehensive support systems. Amy Wilson brings over 20 years of experience as a medical social worker, specializing in critical care, hospice, rare diseases, and, for the past decade, bleeding disorders. She is a published researcher, co-leading a 2023 study on post-traumatic stress disorder and post-traumatic stress symptoms among adults with hemophilia A and B, conducted alongside teams from Mount Sinai Hospital and the Boston Hemophilia Treatment Center. Amy is passionate about integrating mental health advocacy with clinical care, ensuring patients’ emotional and psychological needs are recognized and met. “Trauma isn’t just about what happened, it’s about how you as an individual, your body and mind, react to what happened.” ~Amy Wilson This week on Beyond the Bleeds PTSD and trauma are prevalent in the bleeding disorder community, with 11-14% screening positive, and more than half reported experiencing trauma connected to their condition. Trauma can stem from non-infectious medical events (frequent bleeds, joint damage), chronic pain, psychosocial experiences (bullying and isolation), and infectious complications from prior treatments (HIV, hepatitis). Hospital stays, medical procedures, and negative encounters with providers are significant contributors to PTSD in this population. Trauma doesn’t only present as emotional distress; it can manifest as appointment avoidance, skipping treatments, or even panic when approaching healthcare settings. Signs of PTSD in bleeding disorder patients include intrusion (flashbacks, nightmares), avoidance, negative thoughts and feelings, and hyperarousal (feeling on edge). Younger adults and those with less education face a higher risk for PTSD, especially if they have other medical or mental health conditions. Trauma-informed care, which includes clear communication, informed consent, and a calm provider presence, can significantly enhance patients’ experiences. Social workers play a vital role in assessing emotional needs, providing counseling, crisis intervention, education, and connecting patients to additional support. Guest Contact Information: Amy WilsonM Health Fairview Center for Bleeding and Clotting DisordersMinneapolis, MN LinkedInResources Mentioned: Published study:“Posttraumatic stress disorder and posttraumatic stress symptoms in adults with hemophilia A and B Read the full article here Recommended reading:The Body Keeps Score by Dr. Bessel van der KolkWhat Happened to You? by Dr. Bruce Perry PTSD Checklist for DSM-5 (screening tool)Information on trauma-informed care training. 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. Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer Don’t miss the Hemophilia Outreach Center’s Winter Education Program!We invite you to join us on Saturday, December 6th, 2025, at the Oneida Hotel in Green Bay for a day filled with community, education, and celebration. This special event will feature expert presentations and interactive sessions designed to support and empower patients and caregivers. Attendees will also enjoy a delicious lunch, opportunities to connect with others in the bleeding disorder community, and a variety of activities that make learning fun and engaging. Families are encouraged to bring their children for kid-friendly activities, including a memorable visit from Santa and Mrs. Claus. Registration is quick and easy at hemophiliaoutreach.org/eventsBusinesses interested in making an impact can support the event by donating raffle items that help raise funds for patients living with bleeding disorders.To contribute, please get in touch with Heather at heatherh@hogb.org The post Improving Care through Trauma-Informed Practices in Hemophilia Clinics with Amy Wilson appeared first on Hemophilia Outreach Center.

    40 min
  8. Medicaid and Marketplaces Changing Landscape for Bleeding Disorders Community with Johanna Gray

    09/15/2025

    Medicaid and Marketplaces Changing Landscape for Bleeding Disorders Community with Johanna Gray

    Today on Beyond the Bleeds, John and I delve into the “One Big Beautiful Bill,” a landmark legislation signed into law on July 4, 2025, and its far-reaching impact on individuals and families living with bleeding disorders. We break down what this trillion-dollar healthcare bill really means—from increased costs and new eligibility rules to the practical next steps for protecting our access to care. An extraordinary advocate and expert joins us to help navigate the changes ahead.  Johanna Gray is a Principal at Artemis Policy Group, a health policy and association management firm in Washington, DC. She works with clients, including patient advocacy groups and associations of specialized treatment centers, to develop and implement successful advocacy strategies involving Congress and federal public health agencies. She has served as a federal policy advisor to the National Bleeding Disorders Foundation since 2007 and the Hemophilia Alliance since 2011. Johanna began her career as an intern for then-Senator Barack Obama and has held several positions in policy analysis and government affairs before founding Artemis with her partners, Ellen Riker and Elizabeth Karan, in 2020. She received an MPA from the Maxwell School at Syracuse University and a B.A. in Public Policy Studies with honors from the University of Chicago. Outside of work, she reads extensively to stay current with two book clubs and enjoys traveling, trying new restaurants, and exploring DC with her husband, Dave, and rescue pup, Frank. “I also think our advocacy with partners made H R1 less bad than it could have been…we have moved mountains before, and we will have to again.” ~Joanna Gray Today on Beyond the Bleeds: The “One Big Beautiful Bill” (HR1) implements approximately $1 trillion in healthcare spending cuts, primarily affecting Medicaid and Marketplace (Obamacare) insurance, which will impact approximately 100 million Americans. An estimated 12 million people could lose coverage due to the combined effects of HR1 and new federal rules, making advocacy and vigilance crucial. Medicaid changes will raise barriers through more frequent eligibility checks, new paperwork requirements, higher out-of-pocket costs, and, in some cases, work requirements. Marketplace (Obamacare) insurance buyers will see higher premiums, more verification hoops, and reduced access to subsidies as ACA tax credits are set to expire in 2025 unless Congress acts. Every state may implement changes differently—if you’re in a Medicaid expansion state, or even if not, always check for updated policies, as many states may adopt cuts voluntarily. Don’t rely on internet searches for insurance—use healthcare.gov for the federal or state-based marketplace and consult HTC social workers for guidance. It’s critical to keep your contact information current and respond quickly to any notices about your coverage to avoid loss due to simple errors or missed deadlines. Grassroots advocacy—sharing personal stories and contacting lawmakers—remains the most powerful tool to protect coverage, as legislators closely tally constituent outreach. Guest Contact Information: Joanna GrayArtemis Policy GroupResources Mentioned:bleeding.quorum.us Wisconsin Department of Health Services – Badger Care Plus National Bleeding Disorders Foundation Action Alerts Healthcare.gov for Marketplace insurance enrollment Hemophilia Alliance-advocacy and resources Community Counts (CDC Data Surveillance) To stay informed and make your voice heard, visit the resources above, connect with your HTC, and remember that every story and every email to Congress truly matters. 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. Apple | Spotify | iHeart | Amazon Music | Stitcher | Pandora | Deezer Don’t miss the Hemophilia Outreach Center’s Winter Education Program!We invite you to join us on Saturday, December 6th, 2025, at the Oneida Hotel in Green Bay for a day filled with community, education, and celebration. This special event will feature expert presentations and interactive sessions designed to support and empower patients and caregivers. Attendees will also enjoy a delicious lunch, opportunities to connect with others in the bleeding disorder community, and a variety of activities that make learning fun and engaging. Families are encouraged to bring their children for kid-friendly activities, including a memorable visit from Santa and Mrs. Claus. Registration is quick and easy at hemophiliaoutreach.org/eventsBusinesses interested in making an impact can support the event by donating raffle items that help raise funds for patients living with bleeding disorders.To contribute, please contact Heather at heatherh@hogb.org The post Medicaid and Marketplaces Changing Landscape for Bleeding Disorders Community with Johanna Gray appeared first on Hemophilia Outreach Center.

    35 min
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Ratings & Reviews

5
out of 5
6 Ratings

About

Beyond the Bleeds is your go-to podcast for navigating life with bleeding disorders like hemophilia, von Willebrand disease, and more. Each episode brings expert insights, inspiring personal stories, and practical advice for managing these conditions. Whether you’re living with a bleeding disorder or supporting someone who is, this podcast offers support, education, and a sense of community. Join us as we explore the challenges, triumphs, and innovations in care. For more resources, visit hemophiliaoutreach.org.

Information

  • Creator
    Hemophilia Outreach Center
  • Years Active
    2024 - 2025
  • Episodes
    35
  • Rating
    Clean
  • Copyright
    © Copyright 2024 Beyond the Bleeds
  • Show Website
    Beyond the Bleeds