We are thrilled to share an important advocacy milestone for the Michigan state team, one of the five states participating in BD SUMHAC’s 2024 State Advocacy Program.

The Michigan team recently submitted comments and recommendations for revising state regulations for mental health and substance use treatment facilities. If adopted, these recommendations will expand access for the bleeding disorders community and other patient communities who require the use of infusion medications.

Click to read more!

Authored by Vicky Smith, BD SUMHAC Team Member

The Medical and Scientific Advisory Council (MASAC) to the National Bleeding Disorders Foundation achieved another victory with the approval of Document 289, which outlines the standard of care for patients with bleeding disorders who are seeking behavioral health treatment.

Read this interview with Dr. Mark Reding, who discusses the significance of the new MASAC document. Dr. Reding has been a MASAC volunteer for four years and has chaired its Mental Health and Substance Use Work Group for the past two years.

Authored by the BD SUMHAC Team

When a North Carolina woman’s son needed access to a behavioral health facility in 2020, he was denied – despite posing a significant risk to himself and his family. Witnessing this profound injustice, Gillian Schultz, the director of programs for the Bleeding Disorders Foundation of North Carolina, decided to take action.

Click to read the story of how the BD SUMHAC Access Toolkit came to be and the impact it is making!

Authored by the BD SUMHAC Team

Since its launch in September 2023, the BD SUMHAC State Advocacy Program has brought together teams of advocates to work with state leaders to review and improve access to inpatient behavioral health facilities for people with bleeding disorders.

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.

Click to read a progress update from the Texas Team!

By Kim Phelan, COO, The Coalition for Hemophilia B

June 27th is National PTSD Awareness Day.

Post-traumatic stress disorder (PTSD) is a serious mental health condition affecting an estimated 12 million people in the United States. PTSD is also prevalent among individuals with bleeding disorders.

In this article, Kim Phelan highlights the factors that contribute to PTSD, provides relevant statistics, discusses symptoms, and addresses some of the barriers to treatment for those within the bleeding disorders community who experience this mental health condition.

Click to read the full article.

By BD SUMHAC, HFA, and NBDF

Progress Alert! 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 increases 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 people with disabilities (including people with bleeding disorders) under Section 504 of the Rehabilitation Act of 1973 (Section 504) apply to medical settings.

Read our full statement on the new 504 rule!

by Zach Ryan, HFM; Kaite Scott, HFM: and Dave Rushlow, Munson Healthcare NRBDC

In the fall of 2022, we were shocked to hear of a young man with hemophilia in Massachusetts who overdosed after being repeatedly denied access to residential substance use disorder facilities because of his bleeding disorder. We were even more concerned when it became clear that this was a national pattern.