State Advocacy Program
Background
In August 2023, BD SUMHAC won the Hemophilia Alliance Foundation’s Innovation Grant which supported the creation of the BD SUMHAC State Advocacy Program. In September 2023, BD SUMHAC sought applications from teams of chapter leaders and HTC providers across the U.S., and selected representatives from the following five states: Michigan (MI), Minnesota (MN), Montana (MT), North Carolina (NC), and Texas (TX). Each team is comprised of a lead member from a local BD chapter affiliated with the National Bleeding Disorders Foundation (NBDF) and Hemophilia Federation of America (HFA); a lead member from a local in-state hemophilia treatment center (HTC); and other passionate members from the BDs community, including patients and healthcare providers. BD SUMHAC has worked with these state teams as well as the teams from California, Massachusetts, and New York, over the past 10 months and has learned from the successes and challenges of the efforts in each of these five states.
Goals
The State Advocacy Program seeks to fulfill its mission by achieving the following goals in each state:
-
Identify a specific individual (or individuals) within state government who is willing to serve as a “champion” and help facilitate access to an appropriate treatment program when a person with BD in their state has been denied access to a behavioral health treatment facility. When a Massachusetts community member experienced barriers to access, BD SUMHAC was able to reach out to a previously established contact in the state government to assist in facilitating that person’s successful placement. This goal has the benefit of immediately increasing access for the BD community. However, it requires individuals from that state who have been denied access to proactively reach out to BD SUMHAC and request assistance.
-
Since inpatient and residential MH and SUD facilities are regulated at the state level, it is essential to understand how different states regulate these facilities. This will enable advocates to determine whether there are regulations that either impede or facilitate access to treatment facilities for the BD community in their state. Specifically, teams are most interested in regulations as they relate to:
Admission of individuals with co-occurring medical conditions
Medication administration policies while receiving care in these facilities
Ability to bring speciality medications, namely infusion and injection medications, into these facilities from home
-
Once the advocates have mapped the landscape they can determine the most appropriate and effective strategy for future advocacy. Specifically, does overcoming barriers require changes to regulatory language, statutory language, or education for facilities. Once the path for advocacy has been identified, the advocates can leverage relationships with state agency contacts to further the work. For example, state government officials may present opportunities for regulatory change, or educational sessions for local SUD/MH treatment facilities.
Program Structure
As part of their participation in the program, state teams met virtually with the BD SUMHAC chair and advocacy coordinator once a month to discuss and plan actions towards their program goals. Additionally once a month, all five state teams came together to share updates and report on their individual state team’s progress. Aside from these monthly gatherings, individual state teams also met virtually on an as needed basis to engage with their state government officials and other relevant stakeholders in their community. These meetings provided opportunities for teams to share and present on the local advocacy efforts of BD SUMHAC, as well as ask questions to better understand the state regulatory landscape of inpatient and residential MH and SUD treatment facilities in their state.
