In This Issue...
Jeff Weighs In
Awards and Recognition
Recognizing Excellence: The 2025-2026 Joe Pugliese Educational Award Recipients
We are proud to announce the distinguished recipients of the 2025-2026 Hemophilia Alliance Joe Pugliese Educational Award! This highly competitive scholarship is designed to support members of the bleeding disorders community in achieving their academic dreams. After a rigorous selection process, four outstanding individuals have been awarded $12,500 each to support their educational journeys. This award, established by the Hemophilia Alliance and the Hemophilia Alliance Foundation, is named in honor of Joe Pugliese, a tireless advocate for the bleeding disorders community, this scholarship recognizes the dedication, resilience, and aspirations of those it serves.
Funding for this year’s scholarships was provided by the Hemophilia Alliance and The Alliance Pharmacy.
Anthony Yazurlo
Anthony is a 2025 graduate of De La Salle High School in Concord, CA, where he distinguished himself as a member of the National Honor Society, a STEM tutor, and a student leader. Recognized for his strong work ethic and academic excellence, Anthony has a deep interest in numbers and a growing passion for analytics. He also plays the trumpet and enjoys exploring the intersection of data and decision-making.
Anthony is followed at the UCSF HTC and has been active in the bleeding disorders community, including presenting at an HTC symposium and volunteering as a counselor at the bleeding disorders camp.
He will begin his collegiate work in the fall with a major in Business and Analytics. He plans to continue his engagement in the bleeding disorders community and hopes that his education will enable him to help the community in the future.
Christopher Ambrosio
Christopher is a rising senior at Kings College, where he is set to earn his Bachelor of Science in Medical studies and his Master of Science in Physician Assistant Studies. He is consistently on the Dean’s List. He has been inspired by the care he receives from the HTC team and wants to pay it forward by providing compassionate care to patients as a Physician Assistant.
He is followed at the Northwell Health HTC and has been active in fundraising, education, and outreach regarding bleeding disorders since he was 12 years old. He also is active in advocacy with the NY State Legislature and plans to continue an active role in these activities.
With all his work and accomplishments, Christopher finds time to serve as a volunteer fire fighter in his hometown.
Brian Duval
Brian is currently pursuing a Master of Public Health at Vanderbilt University. He brings extensive advocacy experience within the bleeding disorders community, having volunteered with multiple Bleeding Disorder Chapters including Minnesota/Dakotas, Tennessee, and the Capital Area, with a particular focus on policy issues such as co-pay accumulator reform.
His professional background includes work with the Hemophilia Federation of America, serving as a staff assistant at the Artemis Policy Group, and working as policy manager for the International Foundation for Autoimmune and Autoinflammatory Arthritis. He has also volunteered at a free clinic, assisting clients with applications for patient assistance programs.
As someone living with a bleeding disorder, Brian has a personal connection to his work. He is dedicated to using his education at Vanderbilt to strengthen his advocacy and leadership skills so he can be a valuable resource for individuals with chronic health conditions.
Amber Cranfill
Amber is a non-traditional student with over 20 years of experience as a registered nurse, including caring for children with bleeding disorders. She currently serves as a nurse educator. Amber and her children are followed at the Gulf States HTC. Her son has hemophilia, and her daughter is a carrier.
As a woman with a bleeding disorder who endured a long and difficult journey to diagnosis, Amber is deeply committed to improving the quality of life for other women facing similar challenges. Her personal experiences have shaped her beyond her career as a nurse — they have made her a lifelong advocate.
She has volunteered with her local bleeding disorders chapter and has been an active advocate at both the state and federal levels. Before pursuing her own educational goals, Amber focused on ensuring that her children’s needs were met.
Now enrolled in the RN-to-BSN Bridge Program at the University of Texas at Arlington, Amber plans to become a nurse practitioner. Her goal is to train nurses to deliver compassionate and competent care while also advocating for critical policy changes. Amber brings her lived experience to this mission, hoping to give back to the bleeding disorders community — for her children, her patients, and for those whose voices are not yet heard.
Celebrating Collaboration: Hemophilia Alliance awarded BDA of South Carolina’s 2024-2025 Appreciation and Partnership Award
by Jennifer Borrillo, Senior Vice President of Member and Community Relations
On April 17, 2025, Sue Martin, Executive Director of the Bleeding Disorders Association of South Carolina (BDASC), informed Jeff Blake and Jennifer Borrillo that BDASC had chosen the Hemophilia Alliance as the recipient of BDASC’s 2024-2025 Appreciation and Partnership Award of the Year. Jennifer Borrillo, Senior Vice President of Member & Community Relations, had the distinct honor and pleasure of accepting the award in person on behalf of the Hemophilia Alliance at BDASC’s 52nd Annual HELLO Meeting on Friday, June 6, 2025, at the Embassy Suites in Greenville, South Carolina.
The Bleeding Disorders Association of South Carolina’s HELLO Annual Meeting and Bleeding Disorders Conference had 176 registered attendees and remained focused on their mission to engage, educate, empower, and advocate for the bleeding disorders community in South Carolina. The teen program was led by Gut Monkey and the kids camp by Corporate Kids Events, allowing all attendees the opportunity to connect, learn, and engage.
Sue Martin and the BDASC Board chose the Hemophilia Alliance as the 2024-2025 award recipient in recognition of the Hemophilia Alliance’s advocacy of and support to Hemophilia Treatment Centers and Chapters across the nation, as well as to BDASC personally for the grants they have been awarded, disaster relief, COVID relief, payer support, assistance with patient access to care issues, and letters of support throughout the years. Aaron Smith, President of the BDASC Board of Directors, stressed how vital the disaster relief BDASC received after Hurricane Helene in late 2024 was to the patients impacted in South Carolina profusely thanking the Hemophilia Alliance for making the funding available in less than a week allowing BDASC to help impacted patients and their families during an enormous time of need with minimal delay and no red tape.
The award was presented with BDASC’s sincere appreciation:
“In recognition of your many years of dedicated support to the bleeding disorders community and your valued partnership with the Bleeding Disorders Association of South Carolina in providing patient assistance programs that offer vital relief to our members during times of need.”
Advocacy and Legal Update
Budget Reconciliation Bill Moves to Senate – Significant Impacts to Health Coverage
by Artemis Policy Group
On May 22, 2025, the House passed H.R. 1, the “One, Big Beautiful Bill Act,” by the narrowest of margins (215-214), basically along party lines. Using a Congressional tool known as budget reconciliation, this legislation seeks to advance the President’s tax, defense, and border policy priorities, offsetting the cost of those priorities in large part with cuts to Medicaid and other federal health spending.
The Congressional Budget Office estimates that 16 million individuals will lose coverage due to the Medicaid and ACA provisions in the House-passed bill. The following health policies in the bill are of significant concern:
Medicaid
- The bill would impose mandatory nationwide work reporting requirements on childless, non-disabled adults covered by Medicaid (“Medicaid expansion population”). These requirements would go into effect December 31, 2026;
- The bill would mandate cost-sharing (for services and prescription drugs) for the Medicaid expansion population;
- The bill would repeal streamlined redetermination and enrollment processes for Medicaid;
- The bill would limit Medicaid expansion states’ use of provider taxes as a funding mechanism for states’ share of Medicaid costs;
- The bill would reduce the federal matching percentage for the Medicaid expansion population in states that use state money to provide benefits to immigrants;
Affordable Care Act/Marketplace Plans
- Notably, the bill takes no action to extend the enhanced advance premium tax subsidies (APTCs) that expire at the end of 2025. (The enhanced APTCs, enacted during the pandemic, make premium subsidies more generous.) Expiration of those enhanced APTCs is projected to cause Marketplace premiums to increase by an average of 75%, resulting in a loss of insurance for 4.4 million people.
- The bill codifies a number of policies that narrow eligibility for APTCs and limit opportunities to enroll in Marketplace insurance: shortening the annual open enrollment period, eliminating certain special enrollment opportunities, denying or clawing back APTCs from certain Marketplace purchasers.
- In another technical but significant policy change, the bill eliminates the practice of “silver-loading.”1 This change will lower premiums for silver Marketplace plans but in so doing will reduce APTCs for all who receive them, since APTCs are indexed to the cost of silver plan premiums – effectively raising premium costs for all subsidized purchasers.
340B and PBMs
- The bill would prohibit spread pricing in state Medicaid contracts with PBMs and managed care organizations, requiring transparent pass-through pricing based on ingredient cost plus a dispensing fee.
- 340B covered entities could be paid above actual ingredient cost but would have to report their margins to HHS.
- HHS would publish, at least yearly, a report detailing the aggregate amount of payments in excess of actual ingredient cost to all non-hospital 340B covered entities in a state.
What Happens Next
The bill now moves to the Senate. We anticipate that the Senate will want to change many aspects of the legislation. Put simply, much is in flux and there are still opportunities and a need for engagement.
Trump Administration Releases Additional Budget Documents for FY 2026
by Artemis Policy Group
The Administration’s planned restructuring of the federal health agencies has come into somewhat sharper focus with the recent release of its FY26 proposed budget. Between May 30th and June 6th, the Administration released an HHS Budget in Brief and a Justification of Estimates. Taken together, these documents confirm that HHS intends to create a new Administration for a Healthy America (AHA) that will take over multiple programs (including bleeding disorders activities) previously administered through HRSA, CDC, and other agencies. Here is what we know – and don’t know – based on the release of the President’s budget:
- The MCH block grant and activities to address blood disorders are among the programs that will move to AHA.
- The budget documents do not specify funding levels for the (former) HRSA hemophilia programs. However, the Administration proposes to cut overall funding for special projects of regional and national significance (SPRANS) from $210.1 million (FY24) to $163.7 million. No explanation is given on which SPRANS programs are not being moved to AHA.
- The 340B Drug Pricing Program will move from HRSA to CMS.
- The hemophilia programs formerly housed at CDC will move to AHA, with continued funding at $8.6 million. The FY26 Justification combines two separate line items from previous years into a single line item:
- $ 3.5 million (hemophilia – this funding historically went to the national patient groups for outreach and education programs), and
- $5.1 million (hemophilia treatment centers – this funding was for Community Counts).
- One of the budget documents released proposes to eliminate four NIH institutes and restructure the remaining institutes. The National Heart Lung and Blood Institute (NHLBI) would be consolidated into a new National Institute on Body Systems.
The President’s budget proposal is not binding on Congress but, traditionally, is taken simply as an indicator of the Administration’s priorities. Congress will need to enact legislation to create AHA and to make the other proposed changes for them to take effect. We’ll know more when the House Appropriations Committee marks up its HHS appropriations bill on July 21, 2025.
Member and Community Relations Update
MCRs In the Community
by Karen Bowe-Hause, Director of Member and Community Relations
The Member and Community Relations (MCR) Team is comprised of Angela Blue, Jeff Amond, Karen Bowe-Hause, Mark Plencner, Zack Duffy, Roland Lamy, George Oestreich and Kollet Koulianos. Jennifer Borrillo, Senior Vice President of MCR, leads the team.
As you know, we assist our member HTCs on various issues. Frequently, we attend community events supporting the bleeding and clotting disorder community. Our goal is to get the word out so you know which meetings and events we will be attending. We plan to continue to highlight our community work in the Alliance Newsletter biannually (June & December). Let us know of any future events you’d like us to attend.
While we can’t be everywhere, we strive to meet the needs of our HTCs and Community Partners. So far in 2025, the MCR team attended over 32 state and regional events and meetings in more than 20 states. The team also attended national conferences and advocacy events sponsored by sister organizations, including NBDF, HFA, Coalition for Hem B, THSNA, ATHN, VWD Connect, The Partners in Bleeding Disorders Education programs, and Self-Insurance Institute of America (SIIA).
See below for the MCR team’s plans for the remainder of 2025. We look forward to seeing Hemophilia Alliance members at many of these events.
Future Events MCR Team Members are attending – June 2025 – December 2025
| NBDF CCSC Advisory Board Meeting | June 3-5 | Philadelphia, PA |
| BDASC HELLO Conference & Annual Meeting | June 6-7 | Greenville, SC |
| Brandywine Chapter Annual Meeting | June 14 | Wilmington, DE |
| ISTH Congress | June 21-25 | Washington, DC |
| Eastern PA BDF Annual Meeting | June 25 | King of Prussia, PA |
| Texas Bleeding Disorders Conference | June 20-22 | Dallas, TX |
| 340B Health Coalition – 29th Annual Summer Conference | July 21-23 | Washington, DC |
| PARTNERS: Basic Partners Program for Non-Clinical & Administrative | July 16-17 | Indianapolis, IN |
| VWD Connect Foundation Annual Meeting | July 18-21 | West Palm Beach, FL |
| Tennessee Hemophilia Foundation 55th Annual Meeting | July 25-27 | Pigeon Forge, TN |
| Oklahoma Bleeding Disorders Foundation Annual Meeting | Aug 8-10 | Oklahoma City, OK |
| Eastern PA BDF Unite Walk | Aug 9 | Norristown, PA |
| Arizona Bleeding Disorders Annual Meeting | Aug 15-18 | Phoenix, AZ |
| NBDF BDC | Aug 21-23 | Denver, CO |
| NBDF Colorado Chapter Unite Walk | Aug 23 | Denver, CO |
| PARTNERS: Physician Academy | Sept 14-19 | Indianapolis, IN |
| Arkansas Bleeding Disorders Foundation Annual Meeting | Sept 19-21 | Hot Springs, AK |
| New England Regional Meeting | Sept 29-30 | New York, NY |
| SIIA National Conference | Oct 12-14 | Phoenix, AZ |
| PARTNERS: Advanced Partners for Social Workers | Oct 27-29 | Indianapolis, IN |
| AMCP NEXUS | Oct 27-30 | National Harbor, MD |
| PARTNERS: Basic Partners Program for Clinical Staff | Nov 3-5 | Indianapolis, IN |
| NEHA FALLFEST | Nov 7-9 | Rockport, ME |
| Northern States Region-V West and Great Lakes Regional Meeting | Nov 9-11 | Chicago, IL |
| Mountain States Regional Meeting | Nov 12-14 | Phoenix, AZ |
| National Association of Healthcare Purchasers Coalition | Nov 17-19 | Arlington, VA |
| ASH Annual Meeting & Exhibition | Dec 7-10 | San Diego, CA |
Administration and Operations Update
Welcoming Julie to Team Alliance!
We’re excited to introduce Julie Lichterman, our new Administrative Assistant who joined Team Alliance in May.
Julie brings experience in healthcare marketing, community outreach, and operational leadership. Since earning her Master’s in Public Health from the University of South Florida in 2022, she has worked on health campaigns, helped organize community events, and supported the growth of medical practices. We’re looking forward to Julie’s skillset contributing to our team’s work in supporting our members.
Outside of work, Julie enjoys exploring new painting techniques, training for her next 10k race, and spending time with her family.
Please join us in welcoming Julie—we’re happy to have her on board!
Get Ready for Our Fall Members Meeting & Hill Day!
We’re shaking things up this year—Hill Day is moving to the Fall! Mark your calendars and get ready for a powerful few days in Washington, D.C., packed with connection, advocacy, and inspiration.
- Sunday, October 5: Kick things off with a warm welcome at our evening reception. This is an ideal time to reconnect with colleagues and make new connections.
- Monday, October 6: The day kicks off with engaging presentations and discussions, leading into the “Washington Update,” an insightful Hill Day training session, and concluding with a lively group dinner.
- Tuesday, October 7: It’s time to take our message to Capitol Hill! Join us as we meet with legislators to share vital information and raise awareness about the needs of the bleeding disorders community.
Registration is now open—secure your spot today! Once we receive the booking link from the hotel, it will be emailed out to those that have already registered AND will be available on our website.
We’re also looking for patients and families in the bleeding disorders community willing to share their experiences to join their HTC in meetings with lawmakers. Personal experiences make a powerful impact—if you know someone who would be comfortable sharing their journey with legislators, please reach out to Theresa Parker at theresa@hemoalliance.org
Let’s make this Fall Hill Day unforgettable—see you on the Hill!
Unlocking Insights: The Data Portal
The Hemophilia Alliance continues to advance our resources for our member HTCs, and one of our tools is the Hemophilia Alliance Data Portal. The Data Portal is used to track monthly product purchases.
Benefits of tracking monthly purchases made under the Alliance GPO contracts are:
- Improved HTC pharmacy business insights
- Informed decision making
- Greater potential for savings and rebates
If you have any questions about our data portal or about who at your HTC is using the data portal, please reach out to Jennifer Anders.
Data Portal FAQs:
- Data Portal Log in: Your data portal login is separate from your Alliance member website login
- Data Portal Password: Never share your password for the data portal
- Data Portal Users: If additional users are needed, then we can issue them their own logins
Login to our website and click here to login to the Data Portal. Learn more and discover new ways that the Alliance can support your organization’s mission in providing exceptional care for the bleeding disorders community.
Plan Ahead: 2026 Hemophilia Alliance Meeting Calendar is Here
Hemophilia Alliance hosts eight in-person meetings annually, with four offering CEUs. As a member benefit, these gatherings provide valuable opportunities for networking and exchanging best practices. Whether you’re looking to learn, connect, or collaborate, our meetings are designed to support your success. Dive into the details of our Alliance meetings here. Be sure to mark your 2026 calendars and Save the Date!
Notes From The Community
VWD Connect Foundation Holds 9th Annual Severe Von Willebrand Disease Patient Conference in July
VWD Connect Foundation (VCF) will be holding the 9th Annual National Severe Von Willebrand Disease Conference in West Palm Beach, Florida on July 18-21, 2025. The conference provides four-days of education for severe VWD patients, along with a companion. The Foundation will provide all meals, childcare, and a hotel room for attendees, but patients and guests must provide their own travel to and from the West Palm Beach Marriott. Limited funds are available for travel assistance for patients in financial need.
VCF is a non-profit organization established to serve the bleeding disorder community, focusing on severe Von Willebrand Disease. They provide education and connection for patients and families, and support research which will benefit the Von Willebrand Disease community.
The 2025 conference’s faculty will provide educational sessions and small discussion groups. Faculty members include Dr. Christopher Walsh, Mt. Sinai Hospital, New York, NY, Dr. Ken Friedman, Versiti Blood Center, Milwaukee, WI, Dr. Brooke Sadler, Washington University School of Medicine, St. Louis, MO, and Dr. Robert Sidonio, Emory University, Atlanta, GA. The faculty also includes experienced medical providers and health educators from a diverse group of disciplines such as physical therapy, pediatric gynecology, genetic counseling, HTC social workers and nurses.
Topics will cover diagnosis, symptoms, treatments, genetics, mental wellness, pain, aging, and insurance.
NEW THIS YEAR! The Foundation opened an opportunity for medical and health professionals working with Severe VWD patients to attend the conference under a shadowing program. Hotel, meals, and supplies will be provided for shadowing program attendees. If travel cost is a barrier, they may apply for travel assistance through the program.
For more information about VWD Connect Foundation, the conference or other Foundation activities, please visit our website www.VWDConnect.org or contact Jeanette Cesta, Executive Director, at JCesta@VWDConnect.org or 561-373-3889.
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