Hemo Alliance Newsletters

December 2024 Newsletter

In This Issue...

Jeff Weighs In
Administration and Operations Update

2024 Review – Celebrating Progress and Paving the Future
by Administration & Operations Team

This has been an exciting year of growth and achievement for the Alliance! We started 2024 with our new President and CEO, Jeff Blake and our new SVP Member and Community Relations, Jennifer Borrillo. In October, we welcomed Heidi Lane as our new SVP Administration & Operations. We hosted 9 in-person meetings, embraced new data tools to enhance our impact, and launched a revamped website to better serve our community. We united with patients and families to educate legislators during our impactful Spring Alliance Hill Day, celebrated Joe Pugliese’s remarkable retirement after almost 20 years of visionary leadership and marked our 25th Anniversary—reflecting on the progress we’ve made and the future ahead.

In 2024, of the 9 in-person meetings, 4 offered CEUs at no cost to members: the Pharmacist Meeting, the Linda Gammage Social Worker Conference, the inaugural Physical Therapist CE Meeting, and the first-ever Nurses CE Meeting. A special thank you to the planning committees for their dedication in ensuring engaging agendas focused on networking and best clinical practices. The New HTC Staff Meeting in New York City aimed to help new staff members acclimate to their roles, better understand HTC operations and develop lifelong connections.

Our Spring Member Meeting in Washington, DC, featured our annual Alliance Hill Day and the heartfelt retirement celebration for Joe Pugliese. The Fall Member Meeting in New Orleans was one of our most interactive to date, which included the Alliance’s 25th Anniversary celebration at the NOLA Aquarium. The year closed with the 2nd Annual MP/BA Meeting in Las Vegas, bringing together HTC Medical Providers and Business Administrators for meaningful discussions on next steps for improving their programs. The majority of attendees acknowledge being satisfied or extremely satisfied with the content at our meetings and networking continues to be one of the most important aspects.

We made significant strides in leveraging data and new tools in 2024, particularly with the expansion of manufacturer rebates. By enhancing data quality monitoring and automating communications, we’ve improved transparency and support for our members.

One of the year’s biggest milestones was the launch of our redesigned website in July. After months of planning and feedback, we modernized the platform to be more user-friendly with enhanced communication and accessibility for the community and our members. We look forward to building on this foundation in the years ahead.

As we reflect on a year of tremendous growth and achievement, we are excited to continue advancing our mission and strengthening our community.

Happy Holidays – ‘see you in the New Year!
The Administration & Operations Team

2025 MEETINGS

DATE

Pharmacists CE Conference [REGISTRATION CLOSED]

January 22 – 24, 2025 (San Diego, CA)

Linda Gammage Social Workers CE Conference [REGISTRATION CLOSED]

February 26 – 28, 2025 (Austin, TX)

Spring Member Meeting [REGISTER TODAY]

March 9 – 11, 2025 (Salt Lake City, UT)

Nurses CE Conference [SAVE THE DATE]

April 27 – 29, 2025 (Orlando, FL)

New HTC Staff Orientation [SAVE THE DATE]

April 29 – May 1, 2025 (Orlando, FL)

Physical Therapists CE Conference [SAVE THE DATE]

May 14 – 16, 2025 (Phoenix, AZ)

Fall Member Meeting & Hill Day [SAVE THE DATE]

October 5 – 7, 2025 (Washington, DC)

 

Advocacy and Legal Update

2024 – An Eventful Year for 340B and Insurance Reforms
by the Artemis Policy Group

The Hemophilia Alliance advocacy and legal agenda was jam packed in 2024. Legislation focused on reforming the 340B program became active in both the Senate and House and while not passing this year will likely be the starting point in 2025. Private insurance and PBM reform bills moved forward as well as regulations, many of which will benefit HTCs. The article below reflect the highlights of the past year.

340B Reform Bills

Senate Activity – In February, a bipartisan group of Senators, that became known as the “Gang of Six,” released draft legislation focused on reforming the 340B Discount Drug Pricing Program. Describing themselves as “long-time supporters of the 340B program,” Senators John Thune (R – SD), Debbie Stabenow (D-MI), Shelly Moore Capito (R-WV), Tammy Baldwin (D-WI), Jerry Moran (R-KS), and Benjamin Cardin (D-MD) released a draft bill, called the SUSTAIN 340B Act (Supporting Underserved and Strengthening Transparency, Accountability, and Integrity Now and for the Future of 340B Act’’). The bill aimed to address several key areas of policy in the 340B Program, including contract pharmacies, affiliated sites, transparency, and the patient definition.

The Alliance responded to the Senators Request for Information on the draft bill, offering support for some provisions, but voicing concerns regarding others. We applauded the protections the draft bill provides covered entities against discriminatory reimbursement and other practices by payers which limit the benefits of 340B for covered entities and the affirmation of the use of contract pharmacies in the program. However, the current draft bill bases user fees in the 340B Program on the size of the 340B discount off wholesale acquisition costs – this could be very costly for HTCs.

The Artemis team and the Hemophilia Alliance leadership were engaged with the staffers of the six Senators throughout the year and were given the opportunity to comment on revised versions of the bill. We heard from both Democratic and Republican Senators that they wanted to make sure that the legislation would not harm the HTCs and the patient community they serve. As of the writing of this Newsletter, it is unclear if the SUSTAN Act will be introduced in 2024. We definitely think that this is not the end of the SUSTAIN Act as so much work went into formulating the policy reforms it contains. We are monitoring the bill closely and will continue this work into 2025.

House Activity – Action on 340B Reform in the House of Representatives did not occur until May of 2024, when Reps. Bucshon (R-IL), Carter (R-GA), and Harshbarger (R-TN) introduced the 340B ACCESS Act. The House members introduced legislation that was in large part developed by ASAP 340B (the partnership between PhRMA and the National Association of Community Health Centers) and was based on a set of principles that the group released in March 2024. The Hemophilia Alliance was very concerned with these principles when they were released as they would significantly harm HTC participation in the 340B program.

While the bill was based on the ASAP 340B principles, some of the issues that the Hemophilia Alliance identified were addressed, but issues of concern remained. Unfortunately, there are provisions that would harm HTCs, such as a new patient definition and language around subgrantee participation in 340B that don’t recognize the current structures and practice of HTCs, as well as many burdensome transparency requirements. The Hemophilia Alliance sent a letter to the bill’s sponsors outlining our concerns and recommendations for improvements to the bill text. Without further congressional action, the bill will need to be reintroduced in 2025. It is not clear who will take the lead on 340B Reform in the House due to Rep Bucshon’s retirement, so it may take some time for the bill to be reintroduced, but we think it is likely to happen.

Agency and Regulatory Actions on Private Insurance Reform

Positive developments in lawsuits about copay accumulator adjustors – Early in the year two positive developments occurred related to the lawsuit challenging the HHS rule that allows copay accumulator adjustors. First, the judge in the case ruled against the HHS assertion that they would not have to enforce the 2020 Notice of Benefit and Payment Parameters (NBPP) (that only allows copay accumulator adjustors to be imposed when it is a brand name drug with a generic alternative) as they were planning rulemaking on the issue. The judge said no – that the 2020 NBPP policy was in force. The second update is that the federal government withdrew its appeal of the decision. Since then, a few states have decided to implement the 2020 NBPP law and only narrowly allow copay accumulator adjustors.

Progress on Copay Maximizers, too – On April 2nd, the Department of Health and Human Services (HHS) and the Centers for Medicare and Medicaid Services (CMS) released the final NBPP rule for the 2025 plan year. The NBPP set rules and regulations for plans on the federally run Marketplaces and for other private insurance plans subject to the Affordable Care Act’s provisions.

We were very excited that the rule finalizes a policy that would clarify that covered prescription drugs not included in a State’s essential health benefit (EHB) benchmark plan are still considered essential health benefits (EHBs) and therefore, are subject to policies like the annual out-of-pocket max and the ban on annual and lifetime dollar limits. This effectively closes the EHB loophole, disallowing some copay maximizer programs for individual and small group plans!

Alternative Funding Programs (AFPs) – The Hemophilia Alliance took a leadership role in establishing a work group of organizations concerned about the proliferation of alternative funding programs. Through the work group and independently, we met with federal agency officials (including advisors to the President), many Members of Congress and the leadership of the House Education and Workforce Committee on this issue. We also submitted comments on a “Request for Information” from this Committee focused on ERISA plans’ use of deceptive and harmful practices like copay accumulators, copay maximizers and AFPs.

There have been positive steps forward in the fight against these insurance barriers in the past year. The change in the Administration will likely slow down promised regulations, but many of the officials we have been working with at HHS, Dept of Labor, and IRS are career federal employees who will likely remain. Many of these issues were hot topics in the first Trump Administration and we will continue our efforts.

Hemophilia Alliance Hill Day Focused on 340B and Alternative Funding Programs

With the goal of educating Members of Congress on the importance of the 340B Drug Discount Program to Hemophilia Treatment Centers (HTCs) and the bleeding disorders community, 120 advocates headed to Capitol Hill representing various members of the multi-disciplinary HTC team and their patients on April 18, 2024. In addition, attendees educated Congress about our experience with Alternative Funding Programs, being faced by some patients that are insured by large, self-insured employers.

We look forward to Hill Day 2025, which will be Oct 6 – 7, 2025. The Alliance Hill Days have grown in size and benefited greatly with the participation of HTC patients along with their HTC providers. As stated above the reintroduction of 340B Reform bills will likely occur in the second half of the year, making the timing of the Hill Day effective. We encourage all members to attend.

Big picture, we know that the 119th Congress and new Trump Administration taking office in January will consider policies relating to all of the Alliance’s key advocacy areas – protecting access to the 340B Program and ensuring patient access to comprehensive insurance that provides access to the treatments and HTC services that they need. We wish everyone a happy and peaceful holiday season and look forward to Alliance members and partners joining in advocacy in 2025!

Member and Community Relations Update

MCR’s In the Community

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 Member and Community Relations, leads the team. As you know, a large part of our focus is assisting our member HTCs on a variety of issues. Some of you may not know that we are also out in the community almost every month attending events that support the great work being done in the bleeding and clotting disorder community. As we discussed in our June Newsletter article, the MCR Team will continue to highlight our community work in our Hemophilia Alliance Newsletter twice a year (June & December). Maybe you were there, and we missed you. Maybe you would have attended an event if you knew we were going to be there. Our goal is to get the word out so you know what meetings and events we will be attending. Also, let us know of any future events that you would like us to attend. As you know, we can’t attend everything, but we do our best to meet the needs of our HTCs and Community Partners.

In 2024, the MCR team attended over forty state and regional events and meetings in more than 30 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 2025. We look forward to seeing Hemophilia Alliance members at many of these events.

Future Events MCRs are attending January – June 2025

PARTNERS (Basic Partners Program for Clinical Staff)January 13 – 15 Indianapolis, IN
Rocky Mountain Montana Chapter Education WeekendJanuary 17 – 19 Bozeman, MT
Pharmacist MeetingJanuary 22 – 24 San Diego, CA
Alaska Hemophilia Association Education DayJanuary 25 Anchorage, AK
PARTNERS (Advanced Topics II – Nursing Care Team)January 26 – 28 Arizona
Virginia Hemophilia Foundation State Advocacy DayJanuary 27 Richmond, VA
NBDF Colorado Education Empowerment WeekendFebruary 7 – 9 Denver, CO
PNWBD State Advocacy DayFebruary 9 – 10 Salem, OR
PARTNERS (Basic Partners Program for Clinical Staff)February 17 – 19 Indianapolis, IN
SIIA Healthcare Price Transparency ForumFebruary 18 – 19 Indianapolis, IN
340 B Meeting – 21st Annual Winter ConferenceFeb 24 – 26 San Diego, CA
Linda Gammage SW MeetingFebruary 26 – 28 Austin, TX
NBDF Washington DaysMarch 5 – 7 Washington D.C.
HTRSMar 13 – 15 Coronado, CA
Hemophilia Council of California Legislative DayMarch16 – 17 Sacramento, CA
SIIA Spring ForumMarch 17 – 19 Tampa, FL
HFAMar 27 – 30 San Diego, CA
PARTNERS (Presentation Skills Workshop)March 30 – April 2 Indianapolis, IN
Western States RegionalApril 4 – 6
PARTNERS (Basic Partners Program for Clinical Staff)April 7 – 9 Indianapolis, IN
Coalition for Hemophilia BApril 10 – 13 Orlando, FL
SpringFestApril 26 – 27 Troy, MI
Advanced Nurses CE MeetingApril 27 – 29 Orlando, FL
Mid Atlantic Regional MeetingApril 10 – 11 Alexandria, VA
Physical Therapist CEMay 14 – 16 Phoenix, AZ
PARTNERS (Basic Partners Program for Social Workers)May 19 – 21 Indianapolis, IN
SIIA Cell & Gene Therapy Stakeholder ForumMay 27 – 28 Minneapolis, MN
340B Grantee Spring ConferenceMay 29 – 30 Kansas City, MO
Wisconsin Bleeding Disorder ConferenceJune 6 – 8 Wisconsin Dells, WI
ISTH CongressJune 21 – 25 Washington, D.C.
TEXAS BLEEDING DISORDERS CONFERENCEJune 20 – 22 Dallas, TX
PARTNERS (Basic Program for Non-Clinical & Admin)July 16 – 17 Indianapolis, IN
Notes From The Community

Hemophilia Alliance Foundation Seeking New Board Members

Hemophilia Alliance Foundation

Hemophilia Alliance Foundation (HAF) is seeking nominations for new members to join the HAF Board of Directors. An email and application packet for the election of new HAF Board members is available now and will be sent to all HAF grantees (chapters, HTCs, member orgs, and national orgs), partners and interested candidates for their consideration. The deadline for submission is January 15, 2025.

The Hemophilia Alliance Foundation (hemophiliaalliancefoundation.org) is a non-profit 501c3 corporation dedicated to receiving and administering funds to provide grants to charitable organizations that assist individuals and their families in managing their care of inherited bleeding and thrombotic disorders. The foundation has been providing meaningful financial support since its inception in 2009, and in the past five years alone, it has provided over $4M in grants.

We encourage Newsletter readers to consider applying to this important organization that assists our community. Please contact Michael Craciunoiu, Chair of the HAF Board Development Committee at chair@hemophiliaalliancefoundation.org if you have any questions.

Unite Walk Wall of Walkers Campaign
by Karen Bowe-Hause, Director of Member and Community Relations

In collaboration with the National Bleeding Disorders Foundation, the Hemophilia Alliance was proud to sponsor the 4th annual Unite Walk Wall of Walkers campaign, designed to inspire increased partnership between our member Hemophilia Treatment Centers & their local Chapter affiliates. The Alliance would like to congratulate the 2024 Wall of Walkers Top 5 Hemophilia Treatment Center teams who have earned top fundraising status for the Unite for Bleeding Disorders Walk in their assigned market! HTC teams collectively raised over $38,000 in 2024 to support local chapters—a remarkable accomplishment that highlights the power of partnership. Each of the 5 top HTC teams will receive a $1,500 scholarship that is intended to be used to send a staff member to the 2025 NBDF Bleeding Disorders Conference that will be held in Aurora, CO from August 21st – 23rd.

The 5 winning teams are:

  1. Ortho Walkers – (Team Captain – Doris Quon) – Orthopaedic Institute for Children Hemophilia Program, in support of the Hemophilia Foundation of Southern California
  2. HTC – Smells Like HEME Spirit – (Team Captain – Emily Mahrt) – Oregon Health and Science University Hemophilia Center, in support of the Pacific Northwest Bleeding Disorder Foundation
  3. HTCNV Superstars – (Team Captain – Tamora Locke) – Hemophilia and Thrombosis Center Nevada in support of the Nevada Chapter of NBDF
  4. Dell Children’s HTC – (Team Captain – Arun Gurunathan) – Dell Children’s HTC in support of the Lone Star Bleeding Disorders Foundation
  5. Rady Children’s HTC – (Team Captain – Melissa Grant) – Rady Children’s Hospital HTC in support of the Hemophilia Association of San Diego County

The Hemophilia Alliance would like to thank ALL our member HTC teams for supporting the community, the local Chapters and NBDF in one of the largest fundraising events for NBDF and Chapters across the country!!

Empowering Change: Raising Awareness for Bleeding Disorders in Women, Girls, and People with the Potential to Menstruate

The Western and Eastern Pennsylvania Bleeding Disorders Foundations are truly grateful to the Hemophilia Alliance Foundation for their generous Innovation Grant. With this support, we have been able to launch an important initiative focused on addressing the needs of women, girls, and people with the potential to menstruate who are affected by bleeding disorders.

On average, it takes 16 years from the onset of symptoms for a woman to receive a diagnosis of a bleeding disorder—a delay that is simply unacceptable. This prolonged journey often leaves individuals unaware that their symptoms are part of a larger, treatable condition. With this joint effort between the Eastern and Western Pennsylvania Bleeding Disorders Foundations, we aim to shorten that delay, improve diagnoses, and enhance the quality of life for those affected.

A key element of our initiative has been the distribution of over 3,000 period packs across Pennsylvania. These packs, which have been provided to school nurses, rural health clinics, and university health centers, are designed to support individuals experiencing heavy menstrual bleeding—a common symptom of bleeding disorders. Inside each pack, we’ve included a variety of pads and tampons, feminine wipes, stain remover wipes, disposable underwear, and a single-use menstrual disc with instructions. We’ve also included a card with information about bleeding disorder symptoms, a link to BetterYouKnow.org for an online risk assessment, and practical tips for managing heavy periods.

In addition, we’ve rolled out a magnet and mirror cling campaign, distributing over 2,000 of these materials across 44 colleges and universities in Pennsylvania. These magnets and clings, which highlight common symptoms of bleeding disorders in women, are strategically placed in women’s dorms and bathrooms, ensuring easy access to vital information. Each item includes a QR code that directs individuals to an online risk assessment, providing a simple and accessible way for women to learn more about bleeding disorders.

Over the past year, we’ve also participated in 25 outreach events—health fairs, nurses’ conferences, and community gatherings—where we’ve had the opportunity to engage directly with individuals, raise awareness, and provide valuable resources. A key part of our work is addressing period poverty, and in partnership with Hemophilia Treatment Centers across Pennsylvania, we’ve created a simple online application for individuals to request a $100 gift card for period products. Applicants can apply up to four times a year, ensuring they have access to the products they need.

We’ve also developed a toolkit to help community members get involved in this work. The toolkit includes symptom cards, magnets, mirror clings, and outreach scripts—resources that can be used to raise awareness and share information. These toolkits have been shared with bleeding disorder chapters and organizations across the country and around the world, helping others replicate our efforts and reach even more people.

We’re already seeing the impact of these efforts: at least seven students have been evaluated for a bleeding disorder, and one has received a formal diagnosis. This is just the beginning, and we are excited to continue raising awareness, providing support, and making a difference in the lives of those affected by bleeding disorders.

We are incredibly thankful to the Hemophilia Alliance Foundation for making this initiative possible. Together, we’re creating positive change and supporting women, girls, and people with the potential to menstruate with bleeding disorders in ways that will have a lasting impact.

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