Author: Emily Roush-Bobolz

HFA Announcement to Community and Industry Partners

In response to the ever-evolving landscape and the need to adapt to new challenges, the Hemophilia Federation of America Board of Directors and staff are undertaking an organizational restructure.  As part of this process, there will be some necessary staff adjustments, including a reduction in force. While these decisions are never easy, they are essential […]

Word from Washington: December 2023

Mid-December, for many people, marked the close of the open enrollment period for health insurance plans that will provide coverage beginning January 1, 2024. Preliminary data shows that enrollment in  Affordable Care Act (ACA) Marketplace coverage during the open enrollment period continued to grow at a record-breaking pace. The federal government projects that over 19 […]

Statement: HFA and NBDF Address WHO Recommendations

Hemophilia Federation of America (HFA) and the National Bleeding Disorders Foundation (NBDF) are deeply concerned by the World Health Organization’s (WHO) recommendation of cryoprecipitate (pathogen-reduced and non-pathogen-reduced) in the 23rd Essential Medicines List (EML) for treatment for hemophilia.   With FVIII concentrates available globally, the inclusion of cryoprecipitate as treatment for hemophilia is an egregious, misguided […]

State of the States: Winter 2023

Coverage losses during Medicaid “unwinding” continue to exceed worst fears  More than 12.5 million Americans have lost Medicaid coverage nationwide during the “unwinding” of the COVID-era continuous coverage requirements, according to the most recent data released by KFF.    The U.S. Department of Health and Human Services (HHS) allowed state Medicaid programs to resume eligibility determinations […]

Dear Addy: The Marketplace

Dear Addy,  I am looking at health insurance options for 2024 and keep seeing terms like “marketplace” and “open enrollment.” What does this mean? What options may be available to me if I don’t receive insurance through my job?   Signed, Unsure about Insurance  Dear Unsure,  The Marketplace, short for Health Insurance Marketplace, is a shopping and […]

Novo Nordisk Issues Supply Notice

Novo Nordisk provided the following update about the NovoSeven® RT (coagulation Factor VIIa, recombinant) 8 mg vial. Due to supply constraints, Novo Nordisk will be unable to provide the 8 mg vial of NovoSeven® RT from January until mid-2024. Importantly, the overall supply of NovoSeven® RT is expected to remain intact as other vial sizes are available […]

Word from Washington: November 2023

HFA returned to Capitol Hill on Nov. 13 for its tenth annual Patient Fly-in and Congressional reception. Twenty-two community members from 16 different states came to Washington, D.C., for policy and advocacy briefings, followed by meetings on Capitol Hill with 35 Congressional offices.   Advocates asked lawmakers to support the HELP Copays Act (H.R. 830, S. […]

HFA Project Featured in International, Peer-Reviewed Scientific Journal

Hemophilia Federation of America is excited to announce its work encouraging patient-centered research for females with bleeding disorders, conducted by members of its staff as well as trusted medical advisors in the bleeding disorders community, has been published in the international, peer-reviewed scientific journal Haemophilia. “Females+ with bleeding symptoms or a diagnosis of a bleeding […]

Dear Addy: SSI Eligibility

Dear Addy, I receive disability benefits under the Supplemental Security Income (SSI) program and, through SSI, qualify for Medicaid. I am concerned about hidden pitfalls that might cause me to lose eligibility for both programs. What do I need to watch out for? Signed,Worried Dear Worried, Unfortunately, you are right to be concerned about hidden […]

Word from Washington: October 2023

Hemophilia Federation of America and allied patient advocates cheered a Sept. 29 court decision setting aside a federal rule that harms people who rely on copay assistance. The rule at issue permitted health plans to implement so-called “copay accumulator adjuster programs” (CAAPs)—strategies whereby health plans accept copay assistance, but refuse to credit those amounts toward […]