Impact

Since day 1, 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.

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. In its first two years, BD SUMHAC made presentations at more than 50 in-person and virtual events to raise awareness both inside and outside the bleeding disorders community. BD SUMHAC has supported providers in five states in getting their patients who were initially denied access to treatment because of their bleeding disorders, the placements they needed.

In addition to the community member lives that have been changed by this work, BD SUMHAC has made significant impact at the policy level. Explore the timeline below to see how, with our dedicated members and supporters, BD SUMHAC has increased access for the bleeding disorders community. Together, BD SUMHAC is shaping a world where everyone has equal access to the inpatient and residential mental health and substance use disorder treatment they need.

  • In May 2024, after advocacy from BD SUMHAC, 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, increasing equity and access to behavioral health facilities for people with bleeding disorders. 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). Now, as a result 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.

  • In March 2024, over 50 BD SUMHAC advocates met with Members of Congress in Washington D.C. during the Hemophilia Federation of America's Fly-In and the National Bleeding Disorder Foundation's Washington Days. The goal was to secure support for changes to federal regulations to increase equity and access to behavioral health facilities for people with bleeding disorders. As a result of this advocacy, Senator Ed Markey (MA) and Congressman Joe Courtney (CT) agreed to lead a sign-on letter to HHS echoing BD SUMHAC's public comments. Congressman Carbajal (CA), Congressman Lynch (MA), and Congressman Tonko (NY) also joined in amplifying these efforts. The support garnered through the finalized congressional sign-on letter was a crucial step toward getting the U.S. Department of Health and Human Services (HHS) to incorporate important changes to a new rule under Section 504 of the Rehabilitation Act of 1973 that will improve access for the bleeding disorders community.

  • 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. ASAM’s 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.

  • In November 2023, BD SUMHAC submitted public comments to the federal Department of Health and Human Services. HHS requested public comments on their proposed rule to update Section 504 of the Rehabilitation Act of 1973. Section 504 is the federal regulation that prohibits discrimination on the basis of disability, which includes bleeding disorders. The new rule will clarify that Section 504 applies to access to medical treatment, which will be helpful to the bleeding disorders community. However, BD SUMHAC wanted to make it crystal clear that the rule prohibits provider bias or stereotyping related to medical complexity. In other words, BD SUMHAC wants to ensure that a behavioral health facility provider would not be able to deny a person with a bleeding disorder access without consulting with the individual’s bleeding disorder care team to determine what reasonable accommodations would be required to ensure access.

  • In September 2023, BD SUMHAC launched a State Advocacy Program to identify champions in state government and map the regulatory landscape. BD SUMHAC is working with five state teams from Michigan, Minnesota, Montana, North Carolina, and Texas. Each team is led by advocates from local hemophilia treatment centers and bleeding disorder chapters.

  • In August 2023, BD SUMHAC was awarded a 2023 Innovation Grant from the Hemophilia Alliance Foundation. With this additional funding, NEHA contracted with a part-time Advocacy Coordinator to support the work of the coalition.

  • In August 2023, BD SUMHAC worked with the National Bleeding Disorders Foundation (NBDF)’s Medical and Scientific Advisory Council 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.

  • In July 2023, BD SUMHAC published two comprehensive toolkits—one for providers and one for people with bleeding disorders and their families. These toolkits, widely available through the newly launched BD SUMHAC website, provide a plethora of resources for individuals with BD seeking access to mental health and substance use disorder treatment facilities, as well as for providers advocating for their BD patients. With these in hand, both patients and providers will be able to have more effective conversations with facilities to increase access and respond to denials.

  • In July 2023, BD SUMHAC launched a website to provide the bleeding disorders community with 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.

  • In March 2023, BD SUMHAC received grant funding from Colburn-Keenan Foundation and was awarded a 2023 Mental Health Impact grant from Global Genes. With this support, Kate Bazinsky rolled off of the New England Hemophilia Association’s Board and became the coalition’s official Chair.

  • In August 2022, BD SUMHAC 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.

  • In March 2022, they conducted a national survey, revealing that a staggering 83% of hemophilia treatment center (HTC) providers surveyed faced denials in 20 different states when attempting to place a patient at an inpatient or residential SUD/Mental Health (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.

  • In January 2022, a small group of passionate community members representing both national and local bleeding disorder organizations were moved to act. They 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 late 2021, a young man with a bleeding disorder named Derick was repeatedly denied access to multiple substance use disorder treatment facilities because of his bleeding disorder. Without access to appropriate treatment, Derick overdosed and died. His death shocked the bleeding disorders community.