Hemophilia Insights

This week's must-know community updates, latest research & events

Top Stories

Latest Research

A recent study aimed to analyze the healthcare resource use and costs associated with patients suffering from Hemophilia A and B in France. The study utilized a nationwide claims database to gather data, as there is limited information available on this topic. This analysis is crucial for understanding the economic burden and healthcare needs of patients with these conditions.

The study's focus on healthcare resource use and costs highlights the importance of managing Hemophilia effectively. By examining the data from a nationwide claims database, researchers can better understand how to optimize care and reduce costs for patients with Hemophilia A and B in France. This type of research is essential for improving patient outcomes and reducing the economic impact of these conditions on the healthcare system (Frenzel et al., 2025).

Clinical Trials

Community News

World Federation of HemophiliaWorld Federation of HemophiliaMar 26, 2025

๐ŸŒ This #WorldHemophiliaDay, letโ€™s shine a light on the unique challenges faced by women and girls with #BleedingDisorders. From awareness gaps to social taboos and limited access to care, the hurdles are manyโ€”but so are the opportunities to make a difference. ๐Ÿฉธ

We need to empower women and girls to take charge of their health through targeted educational resources, workshops and support. Learn more: https://bit.ly/3up6exA ๐Ÿ’ช #WHD2025#WeBleedToo

Hemophilia Federation of AmericaHemophilia Federation of AmericaMar 27, 2025

Congratulations to our 2025 HFA Award Winners! ๐ŸŽ‰๐Ÿ‘

We are honored to recognize these incredible individuals for their dedication and impact in the bleeding disorders community:

๐Ÿ† It Takes a Village Award โ€“ Amanda Wilson

๐Ÿ† Charles Stanley Hamilton Legacy Award โ€“ Vincent & Maryann Fusaro

๐Ÿ† Ron Neiderman Humanitarian Award โ€“ Dr. Jonathan Roberts, MD

๐Ÿ† Volunteer of the Year Award โ€“ Renita Johnson

๐Ÿ† Leaders of the Future Young Adult Award โ€“ Kason Loving

๐Ÿ† Michael Davon Community Service Award โ€“ Tamarrow Mitchell

๐Ÿ† TEA Award โ€“ Shari Luckey

Thank you all for your passion, hard work, and contributions that make our community stronger. Congratulations! ๐ŸŽ‰๐Ÿ’™

Hemophilia Federation of America Post
Hope for HemophiliaHope for HemophiliaMar 31, 2025

We're fighting harmful insurance policies that discriminate against people with bleeding disorders and other chronic conditions requiring high-cost medications. Current tactics like copay accumulator adjusters and vertical integration are deliberately designed to reduce access to vital treatments, forcing patients to make impossible financial choices.

โ€ข Copay accumulator programs prevent patient assistance funds from counting toward deductibles, effectively forcing patients to pay twice

โ€ข Insurance companies are creating vertical integration by owning PBMs and specialty pharmacies, then forcing patients to use these pharmacies

โ€ข Independent specialty pharmacies provide crucial services (nursing, education, supplies) that are being eliminated

โ€ข The Help Copays Act gained 142 co-sponsors in the previous Congress but still needs more support

โ€ข PBM reform offers an opportunity to address vertical integration through "any willing provider" language

โ€ข Effective advocacy requires understanding how bills move through committees and reaching both Republican and Democratic lawmakers

โ€ข Building relationships with healthcare staffers is often more impactful than meeting with members directly

โ€ข Hope Charities is organizing a Washington DC advocacy event June 3-5 to speak directly with lawmakers

Email us at [email protected] or [email protected] to share your story or visit hope-charities.org for more information about our advocacy efforts.

Hope for Hemophilia Post

Upcoming Events

APR
26
Trot to Clot 5K Walk/RunIn Person Hemophilia of Georgia โ€ข Atlanta, GA
AUG
21
Annual Bleeding Disorders ConferenceIn Person Hemophilia of Georgia โ€ข Atlanta, GA
SEP
13
Haemophilia Society Sports DayIn Person The Haemophilia Society UK โ€ข London, United Kingdom
APR
16
HFA Symposium in New OrleansIn Person Hemophilia Federation of America โ€ข Washington D.C., DC