Substance Use Coalition
As a founding member of the Bleeding Disorders Substance Use and Mental Health Access Coalition (BD SUMHAC), the New England Hemophilia Association (NEHA) is leading the way to ensure that all individuals with bleeding disorders have access to appropriate substance use and mental health treatment facilities.
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 American, the National Hemophilia Foundation, HTC providers, other chapters, and bleeding disorder community members to establish 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.
BD SUMHAC Resources for HTC Providers
- Best Practices for Accessing Residential Substance Use Disorder Treatment for Individuals with Bleeding Disorders. See document here.
- Draft Letter from the Hemophilia Treatment Center to the Substance Use Disorder Treatment Facility Regarding the Stability of a Bleeding Disorder Patient. See document here.
- Bleeding Disorder Basics Education Sheet for Residential Substance Use Disorder Treatment Facility Staff. See document here.
Advocating for Change
The American Society of Addiction Medicine (ASAM) publishes national guidelines for residential SUD treatment facilities. In 2022, they began reviewing these guidelines. Our coalition submitted public comments requesting changes to increase access to residential SUD facilities for patients with bleeding disorders. Below are our communications with ASAM.
- BD SUMHAC’s Letter to ASAM (June 2022). See document here.
- BD SUMHAC’s Response to ASAM’s Request for Information (June 2022). See document here.
- MASAC’s Letter to ASAM Supporting BD SUMHAC’s Work (June 2022). See document here.
Our coalition plans to continue working with ASAM on the revisions until they finalize the criteria in 2023.
If you or a loved one has been denied access to a SUD or MH treatment facility due to their bleeding disorder, please contact the following members of the Coalition to share your denial experience:
- Marla Feinstein, Senior Policy and Healthcare Analyst, National Hemophilia Foundation: (212) 328-3734, [email protected].
- Mark Hobraczk, Senior Manager for Policy, Hemophilia Federation of America: (813) 965-2127, [email protected].
- Kate Bazinsky, Chair, Bleeding Disorders Substance Use and Mental Health Access Coalition: [email protected].