The New England Hemophilia Association (NEHA) has partnered with the Hemophilia Federation of America (HFA), the National Hemophilia Foundation (NHF), HTC providers, and bleeding disorders community members to establish the Bleeding Disorders Substance Use and Mental Health Access Coalition (BD SUMHAC) to address a critical access issue for the bleeding disorders community. The mission of this coalition is to advocate for access to appropriate substance use disorder (SUD) and mental health (MH) treatment facilities for all individuals with a bleeding disorder.
The coalition began in response to a young man with a bleeding disorder who had asked their hemophilia treatment center (HTC) for help in finding a residential treatment facility for their substance use disorder (SUD). Unfortunately, they were unsuccessful because none of them would take a patient with a bleeding disorder who required intravenous (IV) infusion medications during their stay. Without access to appropriate treatment, the patient overdosed and died. Go here to learn more.
If you or a loved one has been denied access to a SUD or MH treatment facility due to their bleeding disorder, please contact one of the members of the coalition to share your denial experience.
Coalition Contact Information:
Gillian Schultz, Bleeding Disorders Foundation of North Carolina, firstname.lastname@example.org
Kate Bazinsky, Chair, Bleeding Disorders Substance Use and Mental Health Access Coalition: BDSUMHAC@gmail.com
Marla Feinstein, Senior Policy and Healthcare Analyst, National Hemophilia Foundation: (212) 328-3734, email@example.com
Mark Hobraczk, Senior Manager for Policy, Hemophilia Federation of America: (813) 965-2127, firstname.lastname@example.org