Hemo Alliance Newsletters

MCR Update, February 2025

Member and Community Relations Update

Patient Assistance Resources

The start of the calendar year always sees a surge in patient requests for help with insurance premiums and copays. You can find lists and links to manufacturer copay assistance programs, manufacturer compassionate access programs, and charitable foundations that offer copay and/or premium support on webpages of the national patient groups:

Please be aware some of the funds listed on those resource pages may open and close to new enrollment periodically throughout the year. In addition, Hope for Hemophilia offers direct patient assistance. HFA’s Helping Hands, unfortunately, is not currently offering assistance.

One final reminder: the Hemophilia Alliance Foundation does not provide direct patient assistance; rather, HAF makes grants to enable eligible organizations (HTCs and patient advocacy chapters) to build capacity and to support their own financial assistance programs. The upper limit for grants to local patient organizations, HTCs, and sickle cell centers is $8,000; the ceiling for grants to national organizations and for the regional coordinating centers is $10,000.

Hemophilia Alliance Genetic Testing Program

In August 2024, the Hemophilia Alliance created a Genetic Testing Program for eligible patients of Hemophilia Alliance Member HTCs. More information on patient eligibility and testing sites can be found on the Genetic Testing Fact Sheet.

Decoding the Alphabet Soup of Healthcare Savings Accounts

by Kollet Koulianos and Roland Lamy

Managing medical expenses through the various available tax-advantaged healthcare accounts can be helpful and at times confusing. It’s important to understand each option and how they impact the patients we serve. Click here for a quick primer on Flexible Spending Accounts (FSA) also known as Section 125 or Cafeteria plans, Health Savings Accounts (HSA), Health Reimbursement Arrangements (HRA) and Medical Expense Reimbursement Plans (MERP). Each of these accounts offers unique benefits and limitations. Employees / patients should consider all healthcare needs, employment situation, and financial goals when choosing the most suitable option. Providers should understand the variations of these programs and the impact to collecting patient cost sharing.

Also In This Issue…
Jeff Weighs In
Advocacy and Legal Update
  • 340B Recertification is here!
  • Early Administration Actions in 2025
Administration and Operations Update
  • Greetings from Admin and Ops!
  • 2025 & 2026 Meeting Schedules
Notes From The Community
  • Foundation for Women and Girls with Blood Disorders
  • CHES Foundation Programs for HTC Patients
  • Deadline for Completing BD SUMHAC Survey Approaching!

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
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