From Tragedy To Advocacy
From Tragedy To Advocacy
How a young life lost in Massachusetts brought about a national policy change.
Written by Kária Loveing, BD SUMHAC Communications Specialist.
Posted: September 25, 2024. This article was originally shared in our Summer 2024 Newsletter.
In 2021, Derick, a 20-year-old from Massachusetts with severe hemophilia, asked his nurse, Jennifer Feldman, MSN, RN, Clinical Nurse Coordinator at the New England Hemophilia Center at UMass Memorial Medical Center, for help finding a residential treatment facility for his substance use disorder.
Although Jennifer called many residential substance use disorder facilities, none would accept a person with a bleeding disorder who required IV infusions. Tragically, without access to appropriate treatment, the young man overdosed and died.
Searching for answers after Derick’s death, Jennifer Feldman called Rich Pezzillo, NEHA’s Executive Director. Rich connected Jen with Kate Bazinsky who was, at the time, a NEHA Board Member with experience in advocacy and health policy at the federal level. Together they pulled together the Hemophilia Federation of America (HFA), the National Bleeding Disorders Foundation (NBDF), HTC providers, other bleeding disorder chapters from around the country, and individual members of the bleeding disorder community members to establish the Bleeding Disorder Substance Use and Mental Health Access Coalition (BD SUMHAC).
This small coalition wanted to understand whether Derick’s story was a tragic but unusual event, or whether the entire community was facing this barrier to access.
In March 2022, the coalition conducted a national survey of Hemophilia Treatment Center (HTC) providers. The data we received was jarring. A staggering 83% of providers surveyed faced denials, in 21 different states, when attempting to place a patient at an inpatient or residential SUD/MH treatment facility due to the patient’s bleeding disorder. According to provider interviews, people with bleeding disorders are being denied access due to concerns about the use of IV infusion and injection medications, needles, fear related to medical complexity, insurance issues, and access to medication. This data clearly established that inequitable access to behavioral health facilities was a problem facing the entire community and demanded a national solution.
BD SUMHAC’s mission is to advocate for access to appropriate substance use disorder and mental health treatment facilities for all individuals with bleeding disorders, focusing on inpatient and residential facilities. Although BD SUMHAC has grown into a national, multi-stakeholder coalition with over 60 members, NEHA is proud to be the fiscal agent for the coalition.
Since the coalition was formed, the commitment of BD SUMHAC’s team members to breaking down barriers to behavioral health access has propelled the work forward at a remarkable rate.
In August 2022, we released the initial “Best Practices for Accessing Residential Substance Use Disorder Treatment for Individuals with Bleeding Disorders.” This resource offered recommendations to providers seeking placement at substance use treatment facilities on behalf of their patients.
Shortly thereafter, in March 2023, BD SUMHAC received grant funding from the Colburn-Keenan Foundation and was awarded a 2023 Mental Health Impact Grant from Global Genes. With this support, Kate Bazinsky stepped down from NEHA’s Board and became BD SUMHAC’s official Chair. As Chair, Kate recognized the need to include local bleeding disorder chapters in the coalition’s work. Her outreach resulted in twenty chapters from around the country coming together to officially support the coalition and its work. Having the support of chapters, including NEHA, not only helped support the coalition financially, but also ensured that the material produced by BD SUMHAC had many avenues to be delivered to local communities and patients around the country.
That summer, BD SUMHAC launched www.bdsumhac.org to host a wide range of resources, tools, and patient stories to support individuals with bleeding disorders experiencing behavioral health facility denials and the people supporting them. From there, BD SUMHAC published two comprehensive toolkits—one for providers and one for people with bleeding disorders and their families. These toolkits provide a plethora of resources for individuals within our community who are seeking access to mental health and substance use disorder treatment facilities, as well as for providers advocating for their patients who have a bleeding disorder. With these in hand, both patients and providers can have more effective conversations with facilities to increase access and respond to denials.
As another impactful step, BD SUMHAC worked with the National Bleeding Disorders Foundation’s Medical and Scientific Advisory Council (MASAC) to establish that there is nothing inherent in bleeding disorders that would prevent people with stable conditions from receiving inpatient/ residential mental health treatment. MASAC outlined these recommendations in MASAC Document 279. As BD SUMHAC’s advocacy work continued to expand, we were awarded an Innovation Grant from the Hemophilia Alliance Foundation. With this additional funding, we were able to add a part-time Advocacy Coordinator to support the work of the coalition.
In October 2023, BD SUMHAC successfully changed national guidelines for substance use disorder treatment facilities. Before BD SUMHAC’s advocacy work, the American Society for Addiction Medicine (ASAM)’s national criteria implied that if a person used infusion medication, then they could only receive SUD treatment in a hospital-based facility. After the tireless advocacy efforts of our coalition members and advocates in our community, ASAM’s newly-released 4th Edition clarified that if a person can self-manage their condition (and it uses hemophilia as an example) or if their condition can be effectively managed by an external provider, it should not be a reason for exclusion from any level of care. In other words, individuals with bleeding disorders should not be denied access to inpatient or residential treatment due to a stable medical condition!
We are also incredibly proud to report that, after years of advocacy from our coalition and our community, the U.S. Department of Health and Human Services (HHS), through its Office for Civil Rights (OCR), finalized a new rule under Section 504 of the Rehabilitation Act of 1973. The new rule, entitled “Discrimination on the Basis of Disability in Health and Human Service Programs or Activities,” clarifies that medical providers (including behavioral health facilities) must conduct an individualized inquiry to determine whether the facility can meet the person’s needs and that they cannot deny access based solely on the presence of a diagnosis, such as a bleeding disorder.
This rule was finalized after many months of advocacy by key coalition members and the submission of public comments to HHS in November 2023 to request clarified language in the proposed Section 504. BD SUMHAC’s advocacy efforts were also boosted by champions in Congress: Senator Ed Markey (MA) and Congressman Joe Courtney (CT). At Washington Days in March of 2024, families and advocates representing NEHA, from Massachusetts and Connecticut, met with Senator Markey and Representative Courtney in Washington, DC to thank them for their incredible leadership and commitment to this effort. Now, because of this clarification of Section 504, if a behavioral health facility fails to conduct an individualized inquiry when determining eligibility for treatment for an individual with a bleeding disorder, the rule can be referenced to encourage more education and a redetermination. BD SUMHAC will continue to work with OCR to ensure the appropriate enforcement of this newly released clarification of Section 504.
From its first meeting with ten people, BD SUMHAC has grown to over 50 team members from 29 states united in mission, and it is making a difference. Over the past two years, we have made presentations at more than 50 in-person and virtual events to raise awareness both inside and outside the bleeding disorders community. We have worked to support providers in getting their patients who were initially denied access to treatment because of their bleeding disorders the placements they needed. Community member lives are being changed by this work as gaps are being bridged for the bleeding disorders community!
BD SUMHAC is now turning its attention to the national organizations that accredit MH and SUD facilities, such as the Joint Commission. We are hopeful that the Joint Commission can help us educate facilities and reduce the fear of admitting people who require infusion and injection medications. Additionally, we hope to strengthen its advocacy work by collaborating with other patient communities that experience similar denials, such as people with diabetes or immune deficiency. Finally, we are looking forward to identifying new states for participation in the State Advocacy program in 2025, a program that supports state chapter-HTC partnerships in addressing local mental health and substance use disorder access issues.
Photo: Massachusetts advocates meeting with Senator Ed Markey in Washington, DC. Senator Markey has been a leader in our efforts to get this rule changed through the U.S. Department of Health and Human Services’s Office for Civil Rights.