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Hemo Alliance Newsletters

Washington Update, May 2024

Washington Update

by Artemis Policy Group

  • HHS Final Rules Strengthen Protections for People with Bleeding and Clotting Disorders
  • Earlier this month, the Office for Civil Rights, within the Department of Health and Human Services (HHS), finalized a new rule which should improve access to behavioral health facilities for people with bleeding and clotting disorders.

    The Discrimination on the Basis of Disability in Health and Human Service Programs or Activities Final Rule (Discrimination Final Rule) clarifies that the protections afforded to people with disabilities under Section 504 of the Rehabilitation Act (including people with bleeding disorders) apply across medical settings. Importantly for the bleeding disorders community, it clarifies that medical providers (including behavioral health facilities) must conduct an individualized inquiry when determining whether the facility can meet the person’s needs. Additionally, a facility cannot deny access based solely on the presence of a diagnosis, such as a bleeding disorder.

    Leading bleeding disorders advocacy organizations, including Bleeding Disorders Substance Use and Mental Health Access Coalition (BD SUMHAC), National Bleeding Disorder Foundation (NBDF) and Hemophilia Federation of America (HFA), celebrated the Discrimination Final Rule. In their comments to the government, BD SUMAHAC, which includes HFA and NBDF as key coalition members, highlighted the experiences of people with bleeding disorders in being denied access to inpatient and residential mental health and substance use treatment because of their condition. The Hemophilia Alliance supports this important work to bolsters protections for people with bleeding and clotting disorders and advances equity.

    For more information, please see the HHS Press Release, Factsheet, and Discrimination Final Rule text.


  • Biden Administration Releases Final Rule to Crackdown on Harmful “Junk Insurance” Products
  • On April 29, 2024, the Department of Labor (DOL) issued a final rule (DOL Final Rule) related to association health plans (AHPs) which should better protect patients from short-term, limited-duration health plans, a risky form of low-quality health coverage which fits into the larger category of ‘junk” insurance. Marketed as an alternative to traditional health insurance, short-term plans are exempt from many important consumer protections which many in the bleeding disorder community fought to put in place.

    This DOL Final Rule rescinds a 2018 rule that expanded the availability of AHPs by making it easier for a group or association of employers to be treated as the “employer” when offering multiple-employer group health insurance. This effectively allowed more employers to offer health insurance coverage that evades ACA consumer protections – essentially being another type of junk plan.

    In 2019, the U.S. District Court for the District of Columbia largely invalidated the rule, finding certain provisions to be an unreasonable interpretation of ERISA. The decision stopped the rule’s full implementation, but the DOL has rescinded the entire 2018 rule to clarify current law since it too believes that the 2018 AHP rule is not consistent with ERISA’s requirements.

Also in this Issue…

Jeff Weighs In

Marketing and Operations Team Update
· Spring Is In The Air
· Upcoming Webinar and Meeting Schedules

Advocacy and Legal Update
· Hill Day Alumni’s Comic Book, “What is Factor 8?”, Featured on the News

Member and Community Relations Update
· HANS Agreement with Emerging Therapy Solutions (ETS) for Gene Therapy Products

Notes from the Community
· Hemophilia Alliance Foundation Announces Innovation Grants
· Mental Health Art Contest for Adolescents for Adolescents with Heavy Menstrual Bleeding – A Quality Improvement Initiative
· 4th Annual HTC Unite for Bleeding Disorders National Walk Challenge Update

Team Alliance Contact Information

We work for you! Please don’t hesitate to contact any of us with any questions or concerns:

NameEmailPhone
Jeff Blakejeff@hemoalliance.org317-657-5913
Jennifer Borrillo, MSW, LCSW, MBAborrillo@hemoalliance.org504-376-5282
Jeff Amondamond@hemoalliance.org608-206-3132
Jennifer Andersjennifer@hemoalliance.org954-218-8509
Angela Blue, MBAangela@hemoalliance.org651-308-3902
Karen Bowe-Hausekaren@hemoalliance.org717-571-0266
Zack Duffyzack@hemoalliance.org503-804-2581
Michael B. GlombMGlomb@ftlf.com202-466-8960
Johanna Gray, MPAjgray@artemispolicygroup.com703-304-8111
Kiet Huynhkiet@hemoalliance.org917-362-1382
Elizabeth Karanelizabeth@karanlegalgroup.com612-202-3240
Kollet Koulianos, MBAkollet@hemoalliance.org309-397-8431
Roland P. Lamy, Jr.roland@hemoalliance.org603-491-0853
Dr. George L. Oestreich, Pharm.D., MPAgeorge@gloetal.com573-230-7075
Theresa Parkertheresa@hemoalliance.org727-688-2568
Mark Plencnermark@hemoalliance.org701-318-2910
Ellen Rikereriker@artemispolicygroup.com202-257-6670