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Washington Wire: April 2020

April 30, 2020

Over the month of April, the COVID-19 emergency continued to dominate Americans鈥 lives 鈥 and lawmakers鈥 agendas. Here are some of the month鈥檚 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 […]

HFA & NHF Release Preliminary Executive Summary of Safety Summit

April 30, 2020

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 […]

Coronavirus (COVID-19) 鈥 What HFA is Doing

April 30, 2020

Click Below to Translate Page to Spanish. STATEMENTS AND UPDATES During this time of rapidly-changing news surrounding the COVID-19 outbreak, HFA聽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 […]

Infusing Love: When The Time Comes

April 29, 2020

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 […]

Washington Wire: Marzo 2020

April 22, 2020

COVID-19 cambi贸 la vida de pr谩cticamente todos en el transcurso del 煤ltimo mes, y parece probable que las interrupciones en el trabajo, la escuela, la atenci贸n m茅dica y la vida cotidiana en todo el pa铆s contin煤en por un tiempo m谩s. En medio de esta perturbaci贸n, HFA quiere asegurarle que continuaremos sirvi茅ndole y apoy谩ndole. Estamos trabajando […]

Infusing Love: Making Memories

April 22, 2020

  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 […]

Voluntary Recall Notice: Saline Flush Syringes Recalled

April 21, 2020

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: Seeking Assistance

April 20, 2020

Dear Addy- Like many others, I have been laid off of work due to COVID-19. I鈥檓 supposed to receive pandemic unemployment assistance through the CARES Act, but it鈥檚 not in my bank account yet and I have bills to pay. Can HFA鈥檚 Helping Hands program help? Signed, Need a Little Help From My Friends Dear […]

Genentech Notice on COVID-19, Hemlibra庐, and Laboratory Assays

April 16, 2020

Genentech recently distributed a notice relevant to its product Hemlibra庐, 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 […]

Infusing Love: Prepared But Not Prepared

April 15, 2020

  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鈥檚 notice. Even during this age of smart phones, we have […]

Word From Washington: Pandemic Unemployment Compensation, Supplement Security Income & Medicaid

April 14, 2020

HFA has received several questions regarding whether the enhanced unemployment benefits that the federal government provides during the聽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.聽 If […]

HFA Earns GuideStar’s Highest Level of Recognition

April 13, 2020

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 […]

Bayer Letter on Product Availability During COVID-19

April 9, 2020

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 […]

Global Plasma Leaders Collaborate to Accelerate Development of Potential COVID-19 Hyperimmune Therapy

April 6, 2020

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 […]

APLUS Statement on FDA Policy Changes Related to Blood and Plasma Donation

April 2, 2020

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.聽 HFA has signed on to a statement with coalition partners from the American Plasma Users Coalition reiterating APLUS鈥檚 longstanding position that complex blood safety policies such as those related […]

Infusing Love: Sentirse Empoderado

April 1, 2020

Saludos a todas las madres que, como yo, tienen en su vida y en sus corazones una persona muy especial que llena sus d铆as de felicidad. Les contar茅 un poquito sobre mi vida. Crec铆 en una familia donde la hemofilia estaba en nuestro diario vivir. Esto me hizo ver la condici贸n como algo normal. Mi […]

Washington Wire: March 2020

March 31, 2020

COVID-19 upended the lives of virtually everyone over the course of the last month 鈥 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 […]

Takeda Announces Program Updates During COVID-19

March 31, 2020

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鈥檚 safety including postponing upcoming educational events such as our HELLO […]

Supplemental MASAC Statement Regarding Home Delivery and Refill Under State of Emergency Declaration

March 30, 2020

The following is a statement provided by MASAC,聽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 […]

Diplomat Statement on COVID-19

March 27, 2020

The following is a statement provided by Diplomat Specialty Infusion Group. “Living and working through a global pandemic 鈥 the coronavirus (COVID-19) 鈥 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 […]

HFA Extends Halt on Travel and Work from Home for Staff

March 27, 2020

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聽halt all staff travel through the end of May.聽 HFA can assure the bleeding disorders community this will not interrupt communication 鈥 all phones and emails will […]

Pfizer Pauses Recruitment to Clinical Studies

March 26, 2020

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 […]

Spark Temporarily Suspends New Enrollment in Study

March 26, 2020

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 […]

Octapharma Letter on Inventory During COVID-19

March 26, 2020

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.聽 Our staff continues to focus on maintaining production of all […]

Infusing Love: Transitioning from Teen to Adult

March 25, 2020

  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鈥檛 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: Panicked and Confused

March 23, 2020

Dear Addy,聽 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鈥檓 not sure how this will impact me. I鈥檝e been getting benefits through my employer for a while now, but without a job, […]

World Federation of Hemophilia Recommendations for Hemophilia Patients

March 23, 2020

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)**:聽 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 […]

Hemlibra Supply and Coronavirus Update

March 21, 2020

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 […]

Pfizer Hemophilia Product Availability Status During COVID-19

March 21, 2020

The following is a press release from Pfizer. Pfizer Confirms BeneFIX庐 and XYNTHA庐 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 […]

Takeda Guidance on Novel Coronavirus and Product Supply

March 20, 2020

The following is a letter from Takeda. 聽“To the bleeding disorders community,聽 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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