Hemo Alliance Newsletters

Legal Update, May/June 2022

Legal Update

HTCs and Chapters: Partners in Education and Outreach
by Elizabeth “Issie” Karan, Legal Counsel

Hemophilia Treatment Centers (HTCs) ask the Hemophilia Alliance how they can support local chapters. As with all grants management questions, the way the support is structured matters. Below we review relevant guidance and provide suggestions for compliance.

Education and outreach are crucial components of the work of Regional Hemophilia Networks. The Notice of Funding Opportunity (NOFO) Announcements, which fund the Regional HTCs, includes language requiring HTCs to utilize program income to support education and outreach. Specifically, page 5 of the 2017 NOFO states, “reportable net program income is to be used for patient health, education, and supportive services necessary to provide comprehensive care to patients with hemophilia or related clotting and bleeding disorders served by the HTCs.” The NOFO released this year, at page 10, indicates that HTCs should have skill and knowledge used in the care of individuals with bleeding disorders, including “patient education and engagement in care.” The language from the NOFOs make clear that education is a required piece of the scope of the HTC grant.

Despite this, if an HTC wants to collaborate with any external organizations, the HTC must appropriately oversee these programs and activities in accordance with the grant rules. For example, Uniform Grants Guidance prohibits donations using federal funds or program income under 45 CFR § 75.434. This section states that, “Costs of contributions and donations, including cash, property, and services, from the non-Federal entity to other entities, are unallowable.” Additionally, 45 § 75.342, on monitoring and reporting program performance, provides that HTCs are responsible for oversight of the operations of award supported activities, and must cover each program, function or activity.

We recommend that HTCs structure support to Chapters in the form of a simple agreement which outlines the activities the Chapter will undertake using the financial support and provides information back to the HTC about how the funds were spent and what was accomplished. If you need examples of how these agreements can be structured or assistance, please contact the Alliance team.

Also in this Issue…

Notes from Joe
· Hang in There

Alliance Board Update
· New Board Members

Alliance Update
· Harmony in Hemophilia
· HTC Growth Initiative

Washington Update
· Alliance Advocacy Update

Payer Update

Notes from the Community
· Reminder: Announcing the Hemophilia Alliance Foundation 3rd Annual Innovation Grant

Team Alliance Contact Information

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

Name Email Phone
Jeff Blake jeff@hemoalliance.org 317-657-5913
Jennifer Borrillo, MSW, LCSW, MBA borrillo@hemoalliance.org 504-376-5282
Heidi Lane, PT, DPT, PCS heidi@hemoalliance.org 435-659-1230
Jeff Amond amond@hemoalliance.org 608-206-3132
Jennifer Anders jennifer@hemoalliance.org 954-218-8509
Angela Blue, MBA angela@hemoalliance.org 651-308-3902
Karen Bowe-Hause karen@hemoalliance.org 717-571-0266
Zack Duffy zack@hemoalliance.org 503-804-2581
Michael B. Glomb MGlomb@ftlf.com 202-466-8960
Johanna Gray, MPA jgray@artemispolicygroup.com 703-304-8111
Kiet Huynh kiet@hemoalliance.org 917-362-1382
Elizabeth Karan elizabeth@karanlegalgroup.com 612-202-3240
Kollet Koulianos, MBA kollet@hemoalliance.org 309-397-8431
Roland P. Lamy, Jr. roland@hemoalliance.org 603-491-0853
Julie Lichterman julie@hemoalliance.org 941-779-5971
Dr. George L. Oestreich, Pharm.D., MPA george@gloetal.com 573-230-7075
Theresa Parker theresa@hemoalliance.org 727-688-2568
Mark Plencner mark@hemoalliance.org 701-318-2910
Ellen Riker eriker@artemispolicygroup.com 202-257-6670