In This Issue...
Jeff Weighs In
Advocacy and Legal Update
by Artemis Policy Group
340B Recertification is here!
HRSA ‘s Office of Pharmacy Affairs’ 340B Program Recertification period for Hemophilia Treatment Centers will run from February 10-March 10, 2025! To recertify, Authorizing Officials and Primary Contacts must set up a user account in the 340B Office of Pharmacy Affairs Information System (340B OPAIS). The government has indicated that the recertification process has not changed from the previous year and that there will not be a webinar prior to the recertification start date.
Early Administration Actions in 2025
Since taking office, President Trump has issued eighty-plus executive orders (EOs) which are listed on the White House presidential actions webpage. We expect some of these activities to directly impact HTCs and the hemophilia grant programs that provide them with funding.
We have prepared a summary of the President’s EOs pertaining to reducing diversity, equity, and inclusion policies and preferences in government programs. The President planned to freeze federal funding of certain federal programs that were on a list issued by the US Office of Management and Budget. This freeze was rescinded, but the Administration intends to continue the review of programs on the list. The HRSA and CDC Hemophilia programs are on this list.
HTCs with negotiated indirect cost rates with the federal government could be impacted by new guidance from NIH that caps indirect costs charged to NIH at no more than 15%. A federal judge used a temporary restraining order to halt this move for now. However, if an HTC has a negotiated indirect cost rate, you may wish to inquire whether the NIH policy could be applied to your CDC and HRSA grant indirect cost rate too, if this policy were to be reinstated.
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.
Administration and Operations Update
Greetings from Admin and Ops!
We’re excited to remind you all Hemophilia Alliance now hosts 8 action-packed meetings a year!
Our Spring and Fall Member meetings are the perfect opportunity to:
- Share best practices
- Network with fellow members
- Hear Alliance updates and stay current with the latest in the HM 340B space
But wait, there’s more! The Alliance covers travel, lodging, and meals for the other 6 meetings, which include:
- 4 Continuing Education (CE) sessions tailored to specific disciplines
- The MP/BA meeting that brings together our HTC leaders
- Our “new” HTC staff meeting for those new to a member HTC or an administrative role
Ready to join us?
To register, make sure you:
- Are from a member center
- Have created a login through our member portal
Please note: it may take up to 48 hours to approve your member portal access, so plan ahead!
We can’t wait to see you at one of our meetings in 2025!
2025 & 2026 MEETINGS | DATE |
|---|---|
| Linda Gammage Social Workers CE Conference [REGISTRATION CLOSED] | February 26 – 28, 2025 (Austin, TX) |
Spring Member Meeting [REGISTER TODAY] Registration closing Friday, February 28th | March 9 – 11, 2025 (Salt Lake City, UT) |
Nurses CE Conference [REGISTRATION CLOSED] Travel arranged by Hemophilia Alliance | April 27 – 29, 2025 (Orlando, FL) |
New HTC Staff Meeting [REGISTER TODAY]
| April 29 – May 1, 2025 (Orlando, FL) |
Physical Therapists CE Conference [REGISTRATION CLOSED] Travel arranged by Hemophilia Alliance | May 14 – 16, 2025 (Phoenix, AZ) |
Fall Member Meeting & Hill Day [SAVE THE DATE] Registration opening June, 2025 | October 5 – 7, 2025 (Washington, DC) |
Medical Providers & Business Administrators Meeting [SAVE THE DATE] | January 11 – 13, 2026 (Location: TBD) |
Pharmacists CE Conference [SAVE THE DATE] | January 21 – 23, 2026 (Location: TBD) |
Notes From The Community
Foundation for Women and Girls with Blood Disorders
Applications for the Foundation’s Promoting XXcellence in Women’s Health: Optimal Management of Women and Girls with Blood Disorders are due on Friday, February 28, 2025. The $50,000, one year award is targeted to Junior Faculty or Fellows. The purpose of the award is to support a research project in hematology and/or obstetrics/gynecology in the area of blood disorders affecting women and girls. More information can be found here.
CHES Foundation Programs for HTC Patients
The Comprehensive Health Education Services (CHES) Foundation, Inc is dedicated to raising awareness, enhancing education, and fostering relationships. Programs provide an opportunity for families affected by inhibitors, ultra rare bleeding disorders and women who have, or provide care to those with a bleeding disorder an opportunity to be seen, heard, and supported by those who live this experience. For more information on the programs go to the CHES Website – CHES Foundation | Rare Bleeding Disorders.
Deadline for Completing BD SUMHAC Survey Approaching!
As you may know, the Bleeding Disorders Substance Use and Mental Health Access Coalition (BD SUMHAC), a 2023 recipient of the Hemophilia Alliance Foundation Innovation Grant, is working to improve access to inpatient/residential mental health and substance use disorder treatment facilities for individuals with bleeding disorders. BD SUMHAC is conducting a survey to assess the impact of their work over the past three years.
The deadline is Tuesday, February 25th, so if you have not yet completed the survey, please consider doing so today! The link to the survey is here: https://forms.gle/NeYHPdH8G1XjnQuY8. Results will be disseminated to the bleeding disorders community in the late spring.
Thank you for your consideration. If you have any questions, please contact Kate Bazinsky, Chair of BD SUMHAC at kbazinsky@bdsumhac.org.