In this Issue…

Jeff Weighs In

Administration and Operations Team Update
· Don’t Miss Out! Navigating Patient Assistance and Copay Assistance Schemes Webinar
· Re-cap of the 1st Annual Hemophilia Alliance Physical Therapy Conference
· Upcoming Meeting Schedules

Advocacy and Legal Update
· New Research on 340B Program Spending Highlights Differences Among Covered Entities
· 340B Reporting Requirement Added to Medicare Telehealth Bill

Member and Community Relations Update
· MCR’s In the Community – MCR Team

Notes from the Community
· VWD Connect Foundation Annual Conference in July: REGISTRATION STILL AVAILABLE!
· Navigating the Future, Together!

Team Alliance Contact Information

by Jeff Blake, President and CEO

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• Don’t Miss Out! Navigating Patient Assistance and Copay Assistance Schemes Webinar

The Hemophilia Alliance will be presenting a special webinar on understanding the difference between Copay Accumulators, Copay Maximizers, and Alternative Funding Programs. This webinar will be held on July 11 at 1:00pm EST. Click here to register.

In this comprehensive session, attendees will gain a deep understanding of three critical elements of the difference between patient access barriers: copay accumulators, copay maximizers, and alternative funding programs. This talk will demystify these concepts, explain how each mechanism operates, their impact on patients’ out-of-pocket costs, and the broader implications for patients, providers and insurers.

By the end of this session, attendees will be equipped with the knowledge and tools to better understand the nuances of copay accumulators, copay maximizers, and alternative funding programs. They will leave with actionable strategies to support patients in managing their out-of-pocket costs while maintaining access to essential medications.

Speakers:

Becky Burns COO & CFO of the Bleeding and Clotting Disorders Institute, Peoria, IL Click here to learn more about Becky.

Kollet Koulianos Hemophilia Alliance Payer Relations Consultant Click here to learn more about Kollet.

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• Re-cap of the 1st Annual Hemophilia Alliance Physical Therapy Conference

by Heidi Lane (Chair, PT Meeting Committee)

This May the first annual Hemophilia Alliance Physical Therapy CE Conference in Denver, Colorado was held, and all attending felt it was a resounding success. Forty-two physical therapists from member HTCs across the country, including Hawaii, were in attendance. The conference featured a combination of didactic sessions and hands-on labs, with ample time for discussion and sharing of best practices. Topics included a 340B overview, the Hemophilia Joint Health Score (HJHS), use of orthotics as a PT intervention, the importance of rest in acute bleed management, and point of care musculoskeletal ultrasound (MSKUS) for joint health assessment.




The networking opportunities for new and seasoned therapists enriched the learning experience, fostered a sense of community and left attendees feeling rejuvenated to head back to their respective HTCs. Over 90% of attendees reported being “very satisfied” with the conference and when surveyed about their single favorite part of the meeting, more than 50% of attendees reported “networking” and another 20% reported the “lab/lecture” format. A big thank you to the Hemophilia Alliance Team that planned and supported the conference, Sanofi, the Denver Hemophilia Treatment Center, the planning committee, and session speakers for this great opportunity for professional development and networking!

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• Upcoming Meetings

MEETING	DATE
Hemophilia Alliance Fall Member Meeting [REGISTER NOW]	October 9 – 11, 2024
Hemophilia Alliance Physicians & Business Administrators Meeting [REGISTER NOW]	November 14 – 17, 2024
2025 Pharmacist CE Conference [SAVE THE DATE]	January 22 – 24, 2025
2025 Linda Gammage Social Worker CE Conference [SAVE THE DATE]	February 26 – 28, 2025

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• New Research on 340B Program Spending Highlights Differences Among Covered Entities

by Elizabeth ‘Issie’ Karan, Legal Counsel

In a presentation at the 13th Annual Conference of the American Society of Health Economists, Congressional Budget Office (CBO) analysts presented findings from their analysis of data from the Health Resources and Services Administration (HRSA) on spending in the 340B Program. Included in the presentation are data measures that show spending in the 340B program by National Drug Code, by the type of facility where drugs were prescribed, and by whether drugs were distributed through a contract pharmacy.

Overall, researchers found that spending on pharmaceuticals in the 340B drug discount program went from nearly $7 billion in 2010 to $44 billion by 2021—a 19% annual increase—according to preliminary CBO estimates released this week. Although this trend sounds substantial, it tracks overall increases in launch prices over that same period. For example, one study estimated that launch prices, from 2008 to 2021, increased exponentially by 20% per year. So, while industry may want to blame 340B covered entities utilization for 340B Program growth, they must face the role of their own pricing in the increase.

More interesting, perhaps, for the Hemophilia Treatment Center (HTC) community, were the analysts break down of 340B spending by provider type and drug class. For example, findings showed that hospital-based facilities spent significantly more on 340B drugs in 2021 than federal grantees—about $38 billion compared to nearly $6 billion, respectively. The analysts also noted that 73% of the 340B spending growth during the 2020 – 2021, 11-year period can be attributed to spending on three classes of drugs: cancer agents ($18.1 billion), followed by anti-infective agents ($6.6 billion) and immunosuppressants ($6.2 billion) in 2021. According to researchers, blood formulation/coagulation agents constituted $2.5 billion in 340B spending in 2021 which is less than 0.5% of 340B spending that year. See the chart below for the full breakdown.





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• 340B Reporting Requirement Added to Medicare Telehealth Bill

Last month, the House Ways & Means Committee approved the Preserving Telehealth, Hospital, and Ambulance Access Act (H.R. 8261) which extends COVID-era telehealth waivers in Medicare until 2026 and the Medicare Hospital at Home initiative which allows hospitals to provide acute care to seniors in their homes. Hemophilia Treatment Centers and their patients have greatly benefited from the expansion of telehealth in Medicare as it eases access challenges, especially for those with mobility issues or located far from their medical home.

While the Hemophilia Alliance supports the telehealth provisions of the bill, we were disappointed to see a 340B reporting provision added to the bill as a potential cost-savings measure that could pay for the telehealth extension. The provision added to the telehealth bill includes a requirement that PBMs and their affiliated pharmacies annually report to their prescription drug plan sponsors a list of drugs for which they have contracts with a 340B covered entity.

Congress has had 340B under the microscope the past few months. As this legislation highlights, even apart from major legislative reform proposals, Congress seems interested in incremental policy reforms related to the 340B Program.

The Hemophilia Alliance will continue to monitor this Congress closely, especially during “lame duck” session, following the election later this year as the end of year tends to be a busy and fast legislative period even apart from election years.

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MCR’s In the Community – MCR Team

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. Going forward, the MCR Team will highlight our community work in our Hemophilia Alliance Newsletter twice a year (June & December). Please read through the events we have attended. 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 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.

Advocacy Events

• National Bleeding Disorders Foundation (NBDF) Colorado Chapter Statehouse Day
• Ohio State Advocacy Day
• Bleeding Disorder Foundation of North Carolina State Advocacy Day
• NBDF Comprehensive Care &Sustainability Collaborative Advisory Board Meeting
• Pacific Northwest Bleeding Disorders State Advocacy Training and Hill Day
• Hemophilia Council of California Legislative Day
• NBDF Washington Days
• Eastern PA Bleeding Disorders Foundation/Western PA Bleeding Disorders Foundation Advocacy Day

Community Events – Local/Regional

• Wisconsin Bleeding Disorder Conference
• Hemophilia Foundation of Minnesota and the Dakotas (HFMD) Annual Meeting
• Tri-State Bleeding Disorders Patient Education Weekend – Cincinnati, OH
• Bleeding Disorders Foundation of North Carolina Medical Symposium
• NBDF Colorado Chapter Education Empowerment Weekend
• Virginia Hemophilia Foundation Annual Meeting
• Hemophilia Council of California Summit and Rare Disease Forum
• Western States Regional Meeting
• Bleeding Disorder Alliance of North Dakota (BDAND) Education Day and Walk
• Hemophilia Association of NJ Annual Meeting
• Eastern PA Bleeding Disorders Foundation Annual Meeting
• PENN Blood Disorder Program Annual Spring Education Event
• Texas Bleeding Disorders Conference

Community Events – National

• Partners PRN Advanced PT Meeting
• Coalition for Hemophilia B Annual Symposium
• Partners in Bleeding Disorders Education Meeting
• Self-Insurance Institute of America (SIIA) Cell & Gene Therapy Conference
• 340B Winter Coalition Meeting
• Thrombosis & Hemostasis Summit of North America (THSNA) Meeting
• YETI – Youth Effectively Transition to Independence Conference
• Hemophilia Federation of America Mild Matters Physician Forum
• Hemophilia Federation of America Annual Symposium

Future Events

• 340B Summer Coalition Meeting: July 8 – 10, National Harbor, Maryland
• Gateway Hemophilia Foundation Meeting: July 12 – 13, Chesterfield, Missouri
• Partners PRN Non-Clinical HTC Staff Training Program: July 15 – 16, Indianapolis, Indiana
• Western PA Bleeding Disorders Foundation Annual Meeting: July 18, Pittsburgh, Pennsylvania
• VWD Connect Foundation – US National Type 3/Severe VWD Conference: July 19 – 22, West Palm Beach, Florida
• Basic Partners Program for Social Workers: August 5 – 7, Indianapolis, Indiana
• Coalition for Hem B Gala: August 8, Melville, New York
• Oklahoma Hemophilia Foundation Annual Meeting: August 9 – 10, Tulsa, Oklahoma
• Arizona Hemophilia Foundation Annual Meeting: August 16 – 18, Phoenix, Arizona
• Familia de Sangre: Sept 6 – 8, Anaheim, California
• NBDF Bleeding Disorders Conference: September 12 – 14, Atlanta, Georgia
• Hemophilia Foundation of Arkansas Annual Meeting: September 16 -18, Bismarck, Arkansas
• SIIA National Conference: September 22 – 24, Phoenix, Arizona
• Partners PRN Advanced Nursing Program: October 20 – 22, Indianapolis, Indiana
• American Thrombosis & Hemostasis Network Data Summit: October 22 – 23, Atlanta, Georgia
• NBDF Red Tie Soiree: Oct 25, Chicago, Illinois
• Northeast Regional Meeting: October 28 – 29, New York City, New York
• Southeast Regional Meeting: November 6 – 8, Louisville, Kentucky
• Eastern PA Bleeding Disorders Foundation Community Empowerment Day: November 2, Hershey, Pennsylvania
• New England Hemophilia Association Fall Fest: November 8 – 10, Springfield, Massachusetts
• Utah Hemophilia Foundation – Family Fest: Nov 9, Draper, Utah
• Partners Motivational Interviewing Workshop: Nov 18 – 20, Indianapolis, Indiana

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• VWD Connect Foundation Annual Conference in July: REGISTRATION STILL AVAILABLE!

VWD Connect Foundation (VCF) will be holding the 8th Annual National Type 3/Severe Von Willebrand Disease Conference in West Palm Beach, Florida on July 19-22, 2024. The conference provides a four-day patient education conference for Type 3 and severe VWD patients, along with a companion. The Foundation will provide all meals and 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 2024 conference’s faculty will provide educational sessions and small discussion groups. Faculty members include Dr. Christopher Walsh, Mt. Sinai Hospital, New York, NY, Dr. Tung Wynn, UF Health Shands Children’s Hospital HTC, Gainesville, FL; Dr. Robert Montgomery, Versiti Blood Research Institute, Milwaukee, WI, Dr. Veronica Flood, Medical College of Wisconsin, Milwaukee, WI and Dr. Jordan Shavit, University of Michigan. The faculty also includes experienced medical providers and health educators from a diverse group of disciplines such as physical therapy, genetic counseling, HTC social workers and nurses.

Medical session topics will include diagnosis, symptoms, treatments, prophylaxis, genetics, infusion techniques, nosebleeds, anemia and joint challenges. Psychosocial sessions will address the issues of pain, depression, anxiety, disclosure, parenting, aging, transitioning and insurance.

For more information about VWD Connect Foundation, the conference or other Foundation activities, please contact Jeanette Cesta, Executive Director, at JCesta@VWDConnect.org or 561-373-3889.

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• Navigating the Future, Together!

That is the theme of HFA’s Symposium March 27-30, 2025, in sunny San Diego, CA.





HFA is looking for engaging and dynamic speakers to present 60-minute educational sessions on topics relevant to the bleeding disorders community. Audience is primarily the patient community but also includes other relevant stakeholders.

Interested in sharing your knowledge, research, and expertise with a diverse population of interested and eager learners? Please send your topic idea, and a high-level session outline or additional questions to Janet Chupka – j.chupka@hemophiliafed.org

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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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