Progress Report from The Texas State Advocacy Team
Authored by: The BD SUMHAC Team
Since its launch in September 2023, the BD SUMHAC State Advocacy Program has brought together teams of advocates from five states (Michigan, Minnesota, Montana, North Carolina, and Texas) to work with state leaders to review and improve access to inpatient behavioral health facilities for people with bleeding disorders (BDs).
Over the past 8 months, the Texas state advocacy team has worked closely with BD SUMHAC and has made critical progress that will positively affect the lives of children and adults alike across Texas.
In order to participate in BD SUMHAC’s state advocacy program, states must create teams of advocates from both local hemophilia treatment centers (HTCs) and from bleeding disorder chapters. Our Texas team members are Shanna Garcia, director of Texas Central Bleeding Disorders Development & Outreach; Melissa Compton, executive director of the Lone Star Bleeding Disorders Foundation; and Sabrina Farina, senior social worker at Gulf States Hemophilia and Thrombophilia Center.
According to Shanna, they are fortunate to have Sabrina on their team because she has instant credibility as a HTC clinician. “Her position garners different reactions from state agencies and other HTC personnel,” Shanna said.
Their purpose in the program
The goal of BD SUMHAC is to remove entry barriers for residential and inpatient substance use and mental health treatment facilities for people with BDs, including hemophilia, Von Willebrand disease, and other related conditions. Melissa said that they are working in Texas to ensure that patients have access to behavioral health facilities when they need it.
“We’re there to support if there is an issue or some reason that they are being denied,” she said.
Sabrina applied to join BD SUMHAC so that she could be more aware of what is happening not only at a state level but also at the national level.
“I'm invested as the HTC social worker to see what kind of improvements we can make in our patients accessing inpatient care for substance use and mental health,” Sabrina said. “… We want to make sure our patients can access any type of inpatient facility they may be recommended to have. This is about their quality of life and about their mental health and well-being.”
Shanna said that she and Melissa initially applied for the program because they both believed that it was an important cause that had not been addressed in their state; they also have loved ones with hemophilia.
Their progress in the program
Over the past ten months, the Texas team has made tremendous progress. The first goal of the state advocacy program is to identify a champion in state government who can help facilitate access to inpatient and residential mental health and substance use treatment facilities for individuals with bleeding disorders who have received a denial. Through forming a close relationship with Texas Health and Human Services (TX HHS), the Texas team identified individuals in state government on both the mental health and substance use side who have agreed to help in the event that an individual in the bleeding disorders community needs assistance.
“We're doing it for the people that we don't know are going to encounter the denials in the future,” Shanna said. Melissa added that they strive to be “proactive rather than reactive,” in their efforts.
The second goal of the state advocacy program is to map the regulatory landscape. Since behavioral health facilities are regulated at the state level, it is important to determine whether there are any state regulations that prevent access for people who use expensive, infusion or injection medications that need to be procured from a specialty pharmacy.
According to Shanna, the state regulatory barriers were the “biggest unknown;” they had to learn what stood in the way of patients being admitted into residential and inpatient behavioral health facilities. Through conversations with state officials, the team learned more about these regulations and found that Texas Administrative Code actually prohibits SUD facilities from denying access or discharging clients based on use of prescribed medications, and that individuals may self-infuse and self-inject medication at SUD facilities. Consistent with the third goal of the state advocacy program, the team plans to use this information to provide education to SUD facilities about these issues and regulations in order to increase their comfort around accepting and treating people with BDs.
The team is still working with TX HHS to clarify the regulations related to mental health facilities and to determine what work needs to be done to improve access to mental health facilities in Texas, Melissa said.
Their work with BD SUMHAC
The Texas team agreed that their experience of working with BD SUMHAC has been positive.
“[It’s been] very professional, very results-driven, very realistic,” Shanna said. “I have a lot of respect and admiration for how the program has been run.”
With the support of BD SUMHAC, Sabrina collaborated with Melissa Compton to educate all of the HTCs in the Great Plains region on removing entry barriers to residential and inpatient behavioral health facilities for people with BDs. This presentation took place at their annual meeting in April 2024, Sabrina said.
Sabrina added that it is important to look at the situation “through the lens of quality improvement” and work each year to improve the process that is in place.
“It's not all going to occur overnight,” she said. “But little by little … [we] make sure our patients can access the care that they deserve like anyone else.”
Their advice for fall applicants
In the fall, BD SUMHAC will be accepting another round of applicants for the State Advocacy Program for a January 2025 start.
State advocates who are interested in applying should work collaboratively with their chapter and the treatment centers, Sabrina said.
“It's been a great experience to work alongside our local chapter here in Houston,” she said.
Shanna said that the BD community is largely driven by volunteers—and new volunteers are welcome to join the team.
“If you have a passion, there is a place for anything that you want to offer,” she said.
For more information about the BD SUMHAC State Advocacy Program, contact BD SUMHAC’s Chair, Kate Bazinsky via email at kbazinsky@bdsumhac.org.
Additional contact information is available at Contact — Bleeding Disorders Substance Use & Mental Health Access Coalition (bdsumhac.org).