Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
Over the month of April, the COVID-19 emergency continued to dominate Americans’ lives – and lawmakers’ agendas. Here are some of the month’s developments. A fourth COVID relief bill was signed into law on April 24th. R. 266 replenishes the Paycheck Protection Program (established in the March CARES Act but quickly depleted) with an additional […]
Public Comments Sought Over Next 30 Days The National Hemophilia Foundation (NHF) and Hemophilia Federation of America (HFA) are seeking comments from the bleeding disorders community on the executive summary of the NHF/HFA Safety Summit convened in Washington, DC, on January 29-30th, 2020. The summit brought together stakeholders from across the bleeding disorders community, including […]
Click Below to Translate Page to Spanish. STATEMENTS AND UPDATES During this time of rapidly-changing news surrounding the COVID-19 outbreak, HFAÂ will continue to publish updates and information about COVID-19 and its effects on the bleeding disorders community. MEDICAL NEWS INDUSTRY NEWS & PRODUCT AVAILABILITY NATIONAL, GOVERNMENT AND LOCAL NEWS RESOURCES FAQ: BLEEDING DISORDERS AND COVID-19 […]
Our children face difficult things in their life on a daily basis. We teach them, we guide them and then pray it all works out. When they are little, we can control situations and speak for them when we believe we know our children better than anyone in the ER. We are the MOM! We […]
COVID-19 cambió la vida de prácticamente todos en el transcurso del último mes, y parece probable que las interrupciones en el trabajo, la escuela, la atención médica y la vida cotidiana en todo el paÃs continúen por un tiempo más. En medio de esta perturbación, HFA quiere asegurarle que continuaremos sirviéndole y apoyándole. Estamos trabajando […]
The Infusing Mom bloggers have a set schedule on when articles are due each week. As my date drew near, I believed I had my topic. I had been scrolling through my Facebook feed and noticing pictures of kids whose parents had captured the fun they had that day. My kids are older, and […]
The following is information from BD. BD is conducting a voluntary medical device recall for multiple lots of the BD PosiFlush™ SF (Sterile Field) Saline Flush Syringe 10mL identified in the Table above and Attachment A. This product has been confirmed to exhibit holes in the packaging, which impacts package integrity and potentially compromises a […]
Dear Addy- Like many others, I have been laid off of work due to COVID-19. I’m supposed to receive pandemic unemployment assistance through the CARES Act, but it’s not in my bank account yet and I have bills to pay. Can HFA’s Helping Hands program help? Signed, Need a Little Help From My Friends Dear […]
Genentech recently distributed a notice relevant to its product Hemlibra®, reminding health care providers that it is known to interfere with certain laboratory assays used to measure blood coagulation. These tests are often used for patients with bleeding disorders such as hemophilia, and to diagnose and monitor individuals suffering from other conditions that affect coagulation […]
As bleeding disorder parents, we are planners. We love to know what, how and when something is headed our way, and we will be prepared. We have been disaster relief preparing since day one. We have hospital/ER bags ready to go at a moment’s notice. Even during this age of smart phones, we have […]
HFA has received several questions regarding whether the enhanced unemployment benefits that the federal government provides during the national coronavirus emergency could adversely impact people who have Medicaid coverage by virtue of the fact that they receive disability benefits under the Supplemental Security Income (SSI) program. SSI recipients are allowed to work in limited situations. If […]
Hemophilia Federation of America is pleased to announce the organization has earned the 2020 Platinum Seal of Transparency, the highest level of recognition offered by GuideStar, a service of Candid. By sharing metrics that highlight progress HFA is making toward its mission, the organization is helping donors move beyond simplistic ways of nonprofit evaluation. With […]
The following is a copy of a letter from Bayer. “For more than 30 years, Bayer has been providing FVIII therapies and support programs to people living with hemophilia A. As we all face the current coronavirus (COVID-19) outbreak, the health and safety of our patients continues to be a priority. We realize you may […]
The following is from a press release featuring various industry partners. See the press release here. Partnership brings together world-leading plasma companies to focus on developing and delivering a hyperimmune immunoglobulin in the global fight against COVID-19 Biotest, BPL, LFB, and Octapharma have joined an alliance formed by CSL Behring and Takeda Pharmaceutical Company Limited […]
Today the FDA released several new guidance documents with permanent and temporary (during the COVID-19 emergency) changes to several policies related to blood and plasma donation. HFA has signed on to a statement with coalition partners from the American Plasma Users Coalition reiterating APLUS’s longstanding position that complex blood safety policies such as those related […]
Saludos a todas las madres que, como yo, tienen en su vida y en sus corazones una persona muy especial que llena sus dÃas de felicidad. Les contaré un poquito sobre mi vida. Crecà en una familia donde la hemofilia estaba en nuestro diario vivir. Esto me hizo ver la condición como algo normal. Mi […]
COVID-19 upended the lives of virtually everyone over the course of the last month – and it appears likely that nationwide disruptions to work, school, healthcare, and everyday life will continue for some time longer. Amidst this upheaval, HFA wants to reassure you that we will continue to serve and support you. We are working […]
The following is information shared with the bleeding disorders community by Takeda. “Takeda has been closely monitoring the news surrounding COVID-19. Our highest priority is the health and safety of our community during this uncertain time. We are taking steps to help ensure the community’s safety including postponing upcoming educational events such as our HELLO […]
The following is a statement provided by MASAC, the National Hemophilia Foundation’s Medical and Scientific Advisory Council. Patients on home therapy receive regular shipments of clotting factor concentrate (CFC) or non-factor replacement therapy (e.g., emicizumab-kxwh) from their pharmacy providers, often on a monthly basis or as home supplies are depleted. Having an adequate supply of these […]
The following is a statement provided by Diplomat Specialty Infusion Group. “Living and working through a global pandemic — the coronavirus (COVID-19) — is an event none of us has experienced in our lifetime. As the situation continues to evolve, we want you to know that your Diplomat Specialty Infusion Group team will be here […]
On April 24, 2020, Hemophilia Federation of America extended its plan to have all staff who currently work in the Washington, D.C., office to work from home and to halt all staff travel through the end of May. HFA can assure the bleeding disorders community this will not interrupt communication — all phones and emails will […]
The following is information shared by Pfizer Inc. “To avoid adding to the demands on the healthcare system during this unprecedented crisis with COVID-19, we are pausing for three weeks the recruitment portion of our new and ongoing global interventional clinical studies. We are taking this action in the interests of public health, so that […]
The following is a letter provided by Spark Therapeutics. “In the unprecedented time of the COVID-19 (novel coronavirus) pandemic, Spark Therapeutics has closely monitored this evolving situation and taken steps to protect the well-being and safety of both our workforce and the patients and families we serve. In reference to our ongoing gene therapy clinical […]
The following is a letter provided by Octapharma. “As we all manage the challenges presented by the Coronavirus pandemic, Octapharma USA would like to remind you of our commitment to providing our customers life-saving therapies, manufactured to the highest standards of viral clearance and safety. Our staff continues to focus on maintaining production of all […]
I remember when Nick was much younger, we went to a meeting and one of the sessions was on transitioning from teen to adult. I remember thinking I didn’t need/want to go to that because we were nowhere near that time. I blinked and all of a sudden, we are at that time. And […]
Dear Addy, Due to the recent COVID-19 crisis, my employer has made drastic cuts to my work schedule and I am facing potential unemployment. As a person living with a bleeding disorder, I’m not sure how this will impact me. I’ve been getting benefits through my employer for a while now, but without a job, […]
The following is information from the World Federation of Hemophilia. From the World Federation of Hemophilia Medical Advisory Board (MAB)* and the WFH Committee on Product Availability, Safety, and Supply (CPSSA)**:Â For hemophilia patients currently treated with standard or extended recombinant half-life FVIII or FIX concentrates, FEIBA, FVIIa, or emicizumab: No reason to change the […]
The following is a press release from Genentech. “The World Health Organization has declared the COVID-19 (coronavirus) outbreak a global pandemic. We extend our heartfelt sympathies to everyone who has lost loved ones, to patients and healthcare professionals battling this devastating outbreak. With multiple countries implementing measures to slow the spread of the virus, based […]
The following is a press release from Pfizer. Pfizer Confirms BeneFIX® and XYNTHA® Remain Available Pfizer recognizes the public concern in relation to the COVID-19 pandemic, which continues to evolve. We are actively monitoring the situation across the globe, assessing the implications to our patients, colleagues and company, and taking actions to support continued health […]
The following is a letter from Takeda.  “To the bleeding disorders community, As a global pharmaceutical leader, our top priority during the ongoing COVID-19 outbreak is to do all we can to make sure our medicines and services continue to reach the individuals who rely on them, while we protect the health of our employees, […]
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