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Hemo Alliance Newsletters

Washington Update, November 2023

Advocacy Update

2025 NBPP Proposed Rule Released with Positive Policies for Bleeding Disorders Community
by Johanna Gray, Artemis Policy Group, Hemophilia Alliance Advocacy Consultant

On November 15, the Department of Health and Human Services (HHS) and the Centers for Medicare and Medicaid Services (CMS) released the Notice of Benefit and Payment Parameters (NBPP) proposed rule for the 2025 plan year. The NBPP set rules and regulations for plans on the federally run Marketplaces and for other private insurance plans subject to the Affordable Care Act’s provisions.

The proposed rule includes a few provisions that, if finalized, would strengthen the rules and make them better for people with bleeding disorders:

First, there is a provision which clarifies that covered prescription drugs not included in a State’s essential health benefit (EHB) benchmark plan are still considered essential health benefits (EHBs) and therefore, they are subject to requirements including the annual limitation on cost sharing and the restriction on annual and lifetime dollar limits. While this does not address copay accumulator adjustor programs (CAAPs), it does clarify, in federal regulation, that any prescription drug covered by a plan must be considered an EHB and therefore, some copay maximizer programs would not be allowed. We are still waiting on additional guidance from HHS regarding the September ruling on CAAPs, but this provision is another positive step forward in the fight against deceptive insurance practices.

Second, there is a provision in the rule suggesting that HHS is going to change the way they define which drugs must be covered by plans – moving from a list that primarily focuses on drugs covered under Medicare Part D to one that is broader. We have encouraged them to make this change so that it is clearer what Medicare Part B drugs plans must cover, like clotting factor and other bleeding disorders treatments. This new grouping is called the USP DC. Separately, the Alliance worked with NBDF and HFA to advocate to the organization that creates the USP DC that they should separate bleeding disorders treatments into multiple categories and classes to ensure that plans aren’t able to cover, only one hemophilia B treatment and say that is sufficient for all people with bleeding disorders in their plans.

Both provisions are positive signs, though we know that more work is necessary. The Alliance will continue to work with the patient organizations to support these policies and make additional recommendations for HHS to ensure that people with bleeding disorders have access to care.

Also in this Issue…

Notes from Joe

Legal Update
· Genesis Healthcare Inc. v. Becerra: District Court Invalidates HRSA’s Patient Definition and Implementation in 340B Program

Member and Community Relations Update
· From Frustration to Opportunity – Maximizing HANS as a Resource

Alliance Update
· Hemophilia Alliance Resources Available to Members
· 2024 Meeting Schedules

Notes from the Community
· 2023 Unite Walk Wall of Walkers 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