Updated June 21: News from Novo Nordisk, Potential Under-filling of Some Vials on the Market

medical supplies

Please read the latest update on this issue and addendum as of June 21, 2024. HFA published the original update on June 18, below: Novo Nordisk provided the following update about NovoSeven® RT, Novoeight®, and Esperoct® [antihemophilic factor (recombinant),glycopegylated-exei]. “Novo Nordisk has identified an issue on a specific production line that is manufacturing NovoSeven® RT, Novoeight®, […]

Advocacy News: April 2024

Word from Washington After one year, Medicaid coverage losses during “unwinding” continue to surpass worst fears According to the latest KFF Medicaid Unwinding Enrollment Tracker, more than 21 millionAmericans have lost Medicaid coverage during the first year after states were allowed to resume eligibility verifications following the COVID-19 public health emergency. There remains wide variation […]

May is Hepatitis Awareness Month

In 2001, the Centers for Disease Control and Prevention designated the month of May as Hepatitis Awareness Month to bring awareness and attention to those living with viral hepatitis. In the 1980s and ’90s, thousands of people with hemophilia contracted HIV and hepatitis C (HCV) from the contaminated blood supply transmitted by clotting factor products. […]

FDA Approves One-Time Gene Therapy for Adults with Hemophilia B

From Pfizer: Pfizer Inc. announced that the US Food and Drug Administration has approved BEQVEZ™ (fidanacogene elaparvovec-dzkt) for the treatment of adults with moderate to severe hemophilia B who currently use factor IX (FIX) prophylaxis therapy, or have current or historical life-threatening hemorrhage, or have repeated, serious spontaneous bleeding episodes, and do not have neutralizing […]

Advocacy News: March 2024

facade of building

Word From Washington Federal Agencies Supreme Court Congress State of the States Oregon becomes first state in 2024 to pass protections against copay accumulator adjusters. Oregon Governor Tina Kotek (D) signed legislation unanimously passed by the House and Senate that protects consumers in state-regulated health plans from harmful and discriminatory copay accumulator adjuster programs (CAAPs). […]

Update on Smithsonian Institution Project to Archive Bleeding Disorders History

Hemophilia Federation of America announced, in April of 2019, a partnership with the Smithsonian Institution to document the history of the bleeding disorders community, with a focus on the tragic experiences with contaminated blood, and we’re pleased to announce the first phase of the project is complete.   HFA began an initiative to collect artifacts and […]

Scholarship Recipient: Michael Potanin

2023 HFA Educational Scholarship Johns Hopkins University, Maryland I am honored to have been chosen as a recipient of the HFA Educational Scholarship. This recognition provides immense support to me as I pursue my education and career goals. As a hemophiliac who has personally experienced the challenges of living with a genetic disorder, I am […]

Scholarship Recipient: Porus Pavri

2023 HFA Educational Scholarship Rutgers University, New Jersey As an individual with hemophilia, my journey has been shaped by both challenges and determination. These experiences have propelled me towards pursuing a business major and setting ambitious future goals. I believe that the intersection of my personal circumstances and academic aspirations is a unique space where […]