Hemo Alliance Newsletters

Advocacy Update, January 2024

Advocacy Update

Hemophilia Alliance 2024 Hill Day – The United Voices of Our Community
by Dean M. Hindenlang, Ph.D.
Chair, Advocacy Committee and Secretary, Board of Directors

Each year, scores of people arrive on Capitol Hill to meet with members of Congress, to help bring awareness to any number of social, economic, environmental, or health-related causes and concerns. Each person, and each group, seeks to inform, enlighten, and inspire a new point of view within their elected officials.

Similarly, the bleeding disorders community makes their annual pilgrimage, in kind, working to ensure that patients, Hemophilia Treatment Centers, clinicians, insurance and medication costs, changes to current laws or policies, and medication-based access issues are advocated for with decision makers on Capitol Hill. It is essential to the bleeding disorders community that we bring awareness to issues that may otherwise be overlooked or decided without our collective voices weighing in.

This year, the Hemophilia Alliance will be making our annual visit to Capitol Hill on Thursday, April 18, 2024. However, unlike many other groups, we are unique in our approach, and in our collective, unified voice from which we speak.


[Click on image for larger version]

Patients, family members, advocates, nurses, pharmacists, hematologists, and social workers, join us in our meetings. This singular act, this collective voice, our holistic approach, helps to ensure that we can provide unparalleled education, a new perspective, and indisputable expertise — as members of our comprehensive care team are in the room when we meet with our Congressional representatives!

Make certain that your HTC and patients served by your HTC join the Alliance on Capitol Hill on April 18! Our united voice, our collective, comprehensive approach, is unparalleled and unstoppable in what we can accomplish together!

See you on The Hill,

Dean

Also in this Issue…


· Welcome 2024

Washington Update
· Proposed Rule on Affordable Care Act Provisions Published
· Congress Puts Off Funding Bills Until March
· CMS Publishes Prior Authorization Final Rule

Legal Update
· Legal Team Update: Beware! Scammers Steal Funds from Department of Health and Human Services (HHS) Grant Recipients

Member and Community Relations Update
· “The January Blues”

Alliance Update
· Viva Engage! Hemophilia Alliance Virtual Networking Platform
· 2024 Meeting Schedules

Notes from the Community
· WFH 2024 World Congress taking place this April

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
Angela Blue, MBA angela@hemoalliance.org 651-308-3902
Karen Bowe-Hause karen@hemoalliance.org 717-571-0266
Jazzmine Brown, MBA, MSW, LCSW jazzmine@hemoalliance.org 770-570-2649
Ashley Castello, MEd ashley@hemoalliance.org 225-266-5062
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