In late 2021, a 20-year-old individual from New England with a bleeding disorder asked their hemophilia treatment center (HTC) for help in finding a residential treatment facility for their substance use disorder (SUD). Although the HTC nurse called many local residential SUD treatment facilities, none of them would take a patient with bleeding disorder who required intravenous (IV) infusion medications during their stay. Without access to appropriate treatment, the patient overdosed and died.

After her patient’s death, the HTC nurse contacted NEHA to help ensure that no one else would be denied access to necessary SUD treatment because of their bleeding disorder. Chaired by a board member, NEHA brought together the Hemophilia Federation of America, the National Hemophilia Foundation, HTC providers, other chapters, and bleeding disorder community members to establish the BD SUMHAC. The mission of the coalition is to advocate for access to appropriate substance use and mental health treatment facilities for all individuals with bleeding disorders. Learn more about the coalition here.

• Chapter Awareness Toolkit. Download toolkit here.

• National Alliance on Mental Health North Carolina blog post, “A Chronic Condition Should Not Be a Barrier to Behavioral Health Care.” Read article here.
• UMass Memorial Medical Center article about their nurse, Jennifer Feldman, MSN, RN, and their origins of the coalition. Read article here.
• National Hemophilia Foundation’s Hemaware article about the current mental health crisis, and the need to change policies regarding substance use disorder facilities for people with bleeding disorders. Read article here.