Leading Advocacy Organizations Celebrate Federal Rule Strengthening Protections Against Disability Discrimination 

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The Bleeding Disorders Substance Use and Mental Health Access Coalition (BD SUMHAC), National Bleeding Disorder Foundation (NBDF) and Hemophilia Federation of America (HFA) are pleased to share that after advocacy from the bleeding disorders community, the U.S. Department of Health and Human Services (HHS), through its Office for Civil Rights (OCR), finalized a new rule that will increase 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 the protections afforded to to people with disabilities (including people with bleeding disorders) under Section 504 of the Rehabilitation Act of 1973 (Section 504) apply to medical settings. Importantly for the bleeding disorders community, it clarifies that medical providers (including behavioral health facilities) must conduct an individualized inquiry in order to make the determination 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.  

BD SUMHAC, which includes HFA and NBDF as key coalition members, is pleased that HHS responded to their public comments and included strong language in the final rule that will increase equity and access for the bleeding disorders community. The rule states, “In the vast majority of circumstances, where medically indicated care depends on the specific clinical circumstances of the patient seeking treatment, [medical providers] must engage in an individualized inquiry when determining eligibility for treatment.” In other words, a facility must conduct an individualized inquiry and talk with the individual’s care team (and learn about the bleeding disorder and person’s needs) to determine whether they could accommodate that specific individual.  

According to a national survey conducted in 2022, people with bleeding disorders are often denied access to inpatient and residential mental health and substance use treatment because of their bleeding disorder. BD SUMHAC’s mission is to address this issue and increase equity and access to inpatient and residential treatment facilities for all people with bleeding disorders. In talking with providers whose patients had been denied access to appropriate treatment because of their condition, BD SUMHAC found that facilities are often uneducated about bleeding disorders and have significant misconceptions, bias, and stereotypes about the needs of people with bleeding disorders. Yet, rather than taking the time to learn more about the needs of the specific individual requesting access, facilities often deny people with bleeding disorders on the basis that the condition is too “medically complex.” BD SUMHAC looks forward to working with OCR to ensure the appropriate enforcement of this newly released clarification of Section 504.  

Read the press release from HHS announcing the new rule.

View or download the final rule.

View or download the fact sheet on the rule.

About Hemophilia Federation of America 

Hemophilia Federation of America (HFA) was formed in 1994 as a place of education and support for bleeding disorders families. HFA is a national nonprofit that assists and advocates for the bleeding disorders community and is comprised of 44 Member Organizations across the country. Our vision is to remove barriers to choice of treatment and to improve the care and quality of life for all people with bleeding disorders. 

About BD SUMHAC 

Bleeding Disorders Substance Use and Mental Health Access Coalition (BD SUMHAC) is a national, multi-stakeholder advocacy coalition which includes both NBDF, HFA, local bleeding disorder organizations, bleeding disorders clinicians from hemophilia treatment centers, and community members. The mission of BD SUMHAC is to advocate for access to appropriate substance use disorder and mental health treatment facilities for all individuals with BD with a focus on inpatient and residential facilities. BD SUMHAC is not a mental health or substance use disorder treatment organization and does not offer behavioral health treatment or recommendations, but it does support providers in getting people with BD the access they need. 

About NBDF 

NBDF (the National Bleeding Disorders Foundation) is a 501(c)(3) nonprofit organization dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. Established in 1948, NBDF has 54 chapters throughout the United States. Additional information on NBDF and bleeding disorders can be found at www.hemophilia.org/.  

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