Looking Ahead: From Policy Change to People-Powered Access
Authored by: The BD SUMHAC Team
In 2022, when BD SUMHAC began this work, we were trying to answer a basic but urgent question: Why are people with bleeding disorders being denied access to inpatient and residential mental health and substance use treatment?
At first, we assumed the answer would be found in federal or state regulations. But through years of advocacy, policy analysis, and real-world casework, we learned something different and far more complicated.
There are no widespread federal or state laws that prohibit people with bleeding disorders from accessing behavioral health treatment. In fact, people with bleeding disorders are protected under federal disability laws, including the Americans with Disabilities Act and Section 504 of the Rehabilitation Act, which prohibit discrimination on the basis of disability.
The real barrier lies elsewhere.
Behavioral health facilities are granted significant discretion in determining whether they can safely meet an individual’s medical needs. When a facility claims that a person’s bleeding disorder is “too medically complex” to manage, the denial is often framed not as discrimination, but as a safety concern. Too often, these decisions are made without a true understanding of what it takes to manage a bleeding disorder.
Fear, unfamiliarity, stigma, and misunderstanding remain far too common.
BD SUMHAC has made important progress on the policy front. We helped strengthen Section 504 regulations to require individualized assessments, worked with the American Society of Addiction Medicine to clarify in its Fourth Edition Criteria that people who require infusion medication do not automatically require the highest level of care, and supported MASAC recommendations affirming that people with stable, well-managed bleeding disorders should not be excluded from inpatient or residential mental health or substance use treatment.
These wins matter. But they are not enough.
We now know that policy alone will not solve this access problem. Real change requires equipping community members and providers with the knowledge, tools, and confidence to educate facilities, advocate during referrals, and respond effectively to denials.
That understanding is shaping BD SUMHAC’s work in 2026.
As we look ahead, our focus is shifting toward education, empowerment, individual advocacy, and sustainability. This means helping people engage their treatment teams early, often, and honestly, and ensuring they are prepared long before a crisis occurs.
Below are the key initiatives guiding this next chapter.
In 2026, BD SUMHAC will launch the Community Education & Advocacy Project (CEAP) — a national initiative focused on education, awareness, and early engagement around mental health and substance use in the bleeding disorders community.
Because behavioral health facilities have broad discretion in determining whether they can meet an individual’s medical needs, access to care is often influenced by fear, unfamiliarity, and misunderstanding of bleeding disorder management. CEAP is designed to address these challenges before they become barriers to care.
Rather than centering on how to respond to a denial, CEAP presentations focus on raising awareness about mental health and substance use and the unique barriers to access that the bleeding disorder community faces, reducing stigma, and encouraging individuals and families to talk with their treatment teams early, often, and honestly. The program also introduces community members to the tools and resources available to them, so they are informed and prepared should advocacy become necessary in the future.
Through CEAP, BD SUMHAC will partner with four pilot sites to develop and test a community-focused educational program that chapters and hemophilia treatment centers can deliver at local events. The finalized CEAP curriculum will be shared nationally, providing every chapter and HTC with a ready-to-use resource to support education, prevention, and empowerment across the community.
BD SUMHAC is developing a new national online education module designed to increase provider knowledge, confidence, and practical skills related to access to mental health and substance use treatment for people with bleeding disorders.
To lead this work, BD SUMHAC has assembled an exceptional, multidisciplinary author team made up of nationally recognized experts in hematology, behavioral health, social work, and patient advocacy. The core author team includes Miranda Solem, MA, LADC; Lucy Ramirez, MSW, LCSW; Amy Wilson, LICSW; and Kate Bazinsky, MPH. Additional contributions will be made by Mark Reding, MD; Penni Smith, MPA, BSN, RN-BC; Heather Hansen, CSW; Jen Feldman, RN, MSN; Paulette Bryant, MD; and Matt Pace, LMFT.
This highly respected group has finalized the module outline and will begin content development this year. The program will be delivered through the Partners in Bleeding Disorders Education platform and will offer continuing education credit for hematologists, nurses, and social workers.
The module is scheduled for release next October in recognition of Mental Health Awareness Month and Substance Use Prevention Month, and will provide practical, real-world guidance to help providers better support patients navigating behavioral health care.
We are deeply grateful to Partners in Bleeding Disorders Education for their partnership and leadership, and to the Muir family and Glick family for their generous support. This important work would not be possible without their commitment to improving access and equity in care.
Chapters play a critical role in education, trust-building, and early intervention. In 2026, BD SUMHAC will develop a Chapter Toolkit to help local organizations confidently respond to denials of care at inpatient/ residential mental health and substance use treatment facilities within their communities.
BD SUMHAC’s State Advocacy Program demonstrated what is possible through focused, localized policy work. In 2026, we will complete this phase of work, document lessons learned, and transition toward long-term sustainability — ensuring that knowledge, tools, and relationships remain available to the community.
BD SUMHAC will deepen its partnership with the National Bleeding Disorders Foundation (NBDF), building on the hiring of Senior Director of Patient Access Aaron Blocker.
In the year ahead, BD SUMHAC will begin migrating resources to the NBDF website and leverage NBDF’s national platform to reach more families, providers, and advocates — bringing these conversations to the broader bleeding disorders community.
As we move into 2026, our mission is clear: Empower people. Equip providers. Prepare communities.
Together, we can ensure that access to mental health and substance use care is not determined by fear or misunderstanding — but by knowledge, collaboration, and compassion.