In this Issue…

Jeff Weighs In

Advocacy and Legal Update
· WE NEED YOU! Register for the Hemophilia Alliance Hill Day in April

Washington Update
· Congress Continues to Deliberate on 2024 Government Funding
· President Biden Releases 2025 Budget
· HHS/CMS Responds to Cyberattack on Change Healthcare

Member and Community Relations Update
· Hemophilia Alliance 3rd Annual Pharmacist Conference – January 25-26, 2024

Marketing and Operations Team Update
· Alliance Marketing and Operations Team Tours an HTC!
· Upcoming Meeting Schedules

Notes from the Community
· Help Share NBDF and NYU Survey of Bleeding Disorders Community!
· Partners Physician Academy – Applications Are Open Through April 19, 2024

Team Alliance Contact Information

by Jeff Blake, President and CEO

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by Ellen Riker and Johanna Gray, Artemis Policy Group

WE NEED YOU! Register for the Hemophilia Alliance Hill Day in April

Please join us for the 2024 Hemophilia Alliance Spring Meeting and Hill Day on April 15 – 18 in Washington, D.C. This year we are combining the spring meeting which will start with a reception on Monday evening, April 15, followed by an educational meeting on April 16 – 17. The advocacy briefing will kick off the afternoon of April 17 and we will head to the Hill on April 18. All Alliance members and their patients are invited to join us to advocate for the bleeding disorders community.

Why Attend: We will be educating Senators and Representatives and their staff members about bleeding disorders, HTCs, and the importance of the 340B Program to our community. We need your help to ensure policymakers understand our issues since there are multiple 340B “reform” bills floating around. This year we will also be discussing access challenges, such as copay accumulator adjustors and the alternative funding model and how they impact the bleeding disorders community.

Who: We hope that many Alliance members will participate. We encourage you to also recruit a patient from your center to join you. (Patients’ airfare, accommodations and ground transportation in DC will be paid by the Hemophilia Alliance.)

Next Steps/Questions: Please click here to register to participate. The deadline for registration is March 27, 2024. Please contact Johanna Gray at jgray@artemispolicygroup.com or 703-304-8111 for more information.

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• Congress Continues to Deliberate on 2024 Government Funding

On March 8, Congress passed the first of two funding bills to extend federal funding for Departments and Agencies, including the FDA. This bill included a very small number of “riders” (popular authorizing policies outside the funding bills) in healthcare. Of interest to HTCs, is the reduction in the 3.4% cut to physician fees by Medicare, which was initiated on January 1, 2024. A reduction remains, but it has been cut in half starting on March 9, 2024. The second much larger 2024 funding package is expected to be considered by Congress before the March 22 deadline. This bill will include funding for the Department of Health and Human Services and the Department of Defense.

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• President Biden Releases 2025 Budget

On March 11 President Biden released his $7.3 trillion budget for fiscal year 2025. The budget is more of a political statement than anything and has little chance of moving forward in such a divided Congress. Funding for the hemophilia programs at HRSA and CDC are extended at current levels. The budget includes Medicare proposals originally authorized under the Inflation Reduction Act to expand the number of drugs subject to price negotiations, speeding up the pace of implementation, and expanding the $2000/year out-of-pocket cap on drug costs to private insurance plans. More information on the Department of Health and Human Services Budget along with links to the agency congressional justifications with information on the hemophilia programs can be found at https://www.hhs.gov/about/budget/fy2025/index.html

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• HHS/CMS Responds to Cyberattack on Change Healthcare

While the Alliance is yet to hear from any HTCs impacted by the cyberattack on Change Healthcare, a subsidiary of United Health Group, we wanted to provide you with information released by the Department of Health and Human Services – https://www.hhs.gov/about/news/2024/03/05/hhs-statement-regarding-the-cyberattack-on-change-healthcare.html and CMS’ published FAQs. The cyberattack occurred on February 21, 2024 and was the largest shutdown of a payment system in the US.

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Hemophilia Alliance 3rd Annual Pharmacist Conference – January 25-26, 2024
by Resham Sahijram, PharmD, Hemophilia of Georgia and Member of the CE Pharmacists Committee

Over the course of 2 days, pharmacists gathered from different treatment centers across the US to network and further their education in Charleston, South Carolina. The 3rd Annual Hemophilia Alliance Pharmacist Continuing Education Conference had a great turnout with over 40 pharmacists attending in-person, along with 22 others attending virtually. The conference opened with an evening reception where everyone could meet and interact casually with one another.

Thursday, January 25th, began with lectures titled PK-Tailored Factor Concentrate Prophylaxis followed by Practical Approach to Hemophilia Pharmacokinetics. Other interesting topics on Day 1 included the challenges of VWD diagnosis and treatment, regulations in sterile and hazardous compounding, and the burden of adherence in our patients. We enjoyed a nice dinner provided by The Alliance Pharmacy to close out the evening.

Friday January 26th opened with the discussion of new and emerging treatments in Hemophilia. This was very informative and put things into perspective when seeing how far treatments have advanced over the years. We also learned about recognizing and managing muscle bleeds since the launch of non-factor therapies. This knowledge is beneficial when educating our patients as they start new non-factor therapies. We ended Day 2 learning all about rare factor disorders and sickle cell disease (SCD). This was very interesting and helpful as SCD is a disorder we don’t commonly deal with. An added bonus of the conference was the discussion between presenters and the audience. Each treatment center is unique in how it operates, and I can say that most pharmacists felt it was very beneficial to meet and learn how others manage their program. We all enjoyed the conference tremendously and benefited from this opportunity. We look forward to the 4th conference.

Mark Plencner, Director of Member and Community Relations and Chair of the CE Pharmacists Committee added, “We at the Hemophilia Alliance wish to express our gratitude to Takeda Pharmaceuticals and The Alliance Pharmacy for their generous support of our 3rd Annual Pharmacists CE Conference. We also extend our thanks to our knowledgeable faculty who provided the best, most interesting and up to date information available for treating bleeding and clotting disorders. This year, the Indiana Pharmacy Association accredited the CE for our pharmacists. Thank you to Stacy and the IPA team for their efforts to get all 12 hours of lectures approved for ACPE credits for pharmacists and 6 credits approved for pharmacy technicians. Thanks are also due to our CE Pharmacists Committee, Angela Kellum, Resham Sahijram, and Stevan Mizimakoski for their ongoing participation in building these conferences. We are already working on the 4th annual conference.”

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• Alliance Marketing and Operations Team Tours an HTC!

by Marketing & Operations Team

Our mighty team of 4 is often ‘the men and women behind the curtain’ as we plan meetings, keep the website running, and burry our noses in data, but last month we got to stretch our legs and spend some time touring one of our member HTCs at Arnold Palmer Hospital for Children in Orlando, FL. Getting to see first-hand all of the hard work and dedication that goes into running an HTC was both exciting and eye-opening. Meeting with the team of nurses, providers, physical therapist, social worker, and program coordinator, we got to see the comprehensive care model in action, and we enjoyed discussing some of the new changes and challenges facing HTCs today.




As a special treat, the Arnold Palmer team gave us a demonstration of a new infusion education tool that they have developed called VainSim (Venous Access Infusion Simulator). VainSim allows patients to practice self-administering their medication safely and confidently. We were able to test this tool and we can’t wait to see the impact that this is going to have on the bleeding disorders community and beyond. While we love getting to see everyone at our member meetings, experiences like this remind us why WE WORK FOR YOU!

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• Upcoming Meetings

MEETING	DATE
New HTC Staff Orientation [REGISTRATION CLOSED]	March 25 – 27, 2024
Spring Members Meeting and Hill Day [REGISTER NOW]	April 15 – 18, 2024
Physical Therapists CE Conference [ONLY VIRTUAL IS STILL AVAILABLE]	May 15 – 17, 2024
Nurses CE Conference [REGISTER NOW]	June 10 – 12, 2024
Fall Members Meeting [SAVE THE DATE]	October 9 – 11, 2024
Physicians and Business Administrators Meeting [SAVE THE DATE]	November 14 – 17, 2024

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• Help Share NBDF and NYU Survey of Bleeding Disorders Community!

Since it announced its new name last fall, the National Bleeding Disorders Foundation (NBDF) has been working with a team of graduate students at the New York University Wagner School of Public Service on a project supporting NBDF’s rebranding to expand its reach across the blood and bleeding disorder community.

As part of the project, the NYU and NBDF team has developed a Community Engagement Survey directed towards individuals with blood or bleeding disorders and their family members, caregivers, and treaters. The survey seeks insights on needs that respondents feel are currently unmet by NBDF and other patient advocacy organizations.

Please click here to take the short survey. Please share broadly within the blood and bleeding disorders community! We are especially hoping that Alliance members might be able to share with people living with other blood disorders and those who are not already involved with NBDF.

Please contact Johanna Gray at jgray@artemispolicygroup.com with any questions!

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• Partners Physician Academy – Applications Are Open Through April 19, 2024

TRAINING PROGRAM IN CLASSICAL HEMATOLOGY FOR EARLY-CAREER PHYSICIANS & ADVANCED FELLOWS



Applications Are Open for Annual Partners Physician Academy on September 23-27, 2024


The Partners Physician Academy has been established as a U.S.-based, bleeding disorders-focused educational program delivered by hemostasis/thrombosis experts, intended for second- to fourth-year fellows or early career physicians (up to five years post-fellowship). The program’s goal is to support and accelerate career advancement of physicians in fellowship or those early in their career, for leadership as part of the Hemophilia Treatment Center (HTC) Network.

This 5-day training course will take place September 23-27, 2024 in Indianapolis, Indiana. Participants are expected to arrive in Indianapolis on September 22 and required to attend all days.

The Partners Physician Academy provides an optimal environment that fosters learning and community-building through an interactive program featuring didactic presentations, case discussions, hands-on training, small group breakouts, patient and community voices and perspectives, and direct interaction with nationally recognized HTC leaders. This program is seeking to enroll qualified individuals who demonstrate passion and a commitment to furthering their clinical career, establishing collaborative relationships among the HTC Network, and aspiring to obtain a leadership role within the HTC community.

Visit our website to learn more about the program agenda, covered costs for all selected applicants, and to hear from past participants regarding their Academy experience.

Eligible candidates should be:

• Second- to fourth-year fellow or early career physician (up to 5 years post-fellowship)
• Currently seeing patients in the field of bleeding disorders
• Working or intending to work as part of the federally recognized U.S. HTC Network
• Available to attend the entire academy, September 22-27, 2024




Please consider sharing this exciting opportunity on your website and sending this message to your membership to ensure all eligible candidates are made aware of the program should they wish to apply.

Thank you,
Partners Physician Academy Advisory Board

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Team Alliance Contact Information

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

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