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Washington Wire: April 2020

April 30, 2020

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 […]

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) • 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 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 […]

BioMarin Update on Impact of COVID-19 on Clinical Trials

April 27, 2020

The following information is provided by BioMarin to provide general information about its ongoing clinical trials in the context of the COVID-19 pandemic.  “As more cases of COVID-19 are confirmed, we recognize the increased challenges and concerns faced by participants in the BioMarin Gene Therapy clinical studies. The safety and well-being of patients, healthcare providers, […]

Takeda Expands Patient Assistance in the U.S. During COVID-19 Crisis 

April 27, 2020

Below is a letter from Takeda. “To our valued patients, customers and other stakeholders,  As the COVID-19 crisis continues to unfold, Takeda’s Patient Assistance Response team is working around the clock to help ensure that the people who need our medicines and treatments can continue to access them safely and without interruption.  Consistent with our […]

Washington Wire: Marzo 2020

April 22, 2020

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 país continúen por un tiempo más. En medio de esta perturbación, HFA quiere asegurarle que continuaremos sirviéndole y apoyándole. Estamos trabajando […]

Spark and Roche Update on Hemophilia Gene Therapy Program

April 22, 2020

The following is an update on the Spark and Roche gene therapy program. “Together, Spark and Roche remain fully committed in our objective to meet the needs of the hemophilia community by developing gene therapies for hemophilia A that, with the lowest effective dose and optimal regimen to manage the immune system response, demonstrate safety, […]

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’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 Notice on COVID-19, Hemlibra®, and Laboratory Assays

April 16, 2020

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 […]

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’s 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 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 […]

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 […]

NVHR Applauds Latest Guidance from CDC Recommending Hepatitis C Screening for U.S. Adults

April 10, 2020

The following is a press release from the National Viral Hepatitis Roundtable. The latest guidance from the CDC is an important step in the fight for hepatitis C elimination, but increased federal funding for viral hepatitis still needed. The National Viral Hepatitis Roundtable, a national coalition working to eliminate viral hepatitis, today applauded the U.S. […]

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 […]

HEMA Biologics Announces FDA Approval of SEVENFACT

April 6, 2020

The following is a press release from HEMA Biologics. HEMA BiologicsTM Announces FDA Approval of SEVENFACT® [coagulation factor VIIa (recombinant)-jncw] for Treatment and Control of Bleeding Episodes Occurring in Adult and Adolescent Hemophilia A and B Patients with Inhibitors Louisville, KY – April 6, 2020 HEMA Biologics, LLC, (“HEMA Biologics”) today announced that the U.S. […]

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.  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 […]

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 días de felicidad. Les contaré un poquito sobre mi vida. Crecí en una familia donde la hemofilia estaba en nuestro diario vivir. Esto me hizo ver la condición 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 – 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’s 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, 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 — 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 […]

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 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 […]

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 […]

uniQure Announces Achievement of Target Patient Dosing in HOPE-B Pivotal Trial

March 26, 2020

The following is a press release from uniQure. uniQure N.V., a leading gene therapy company advancing transformative therapies for patients with severe unmet medical needs, announced it has achieved the targeted dosing of patients in the HOPE-B pivotal trial of etranacogene dezaparvovec (AMT-061), an investigational AAV5-based gene therapy incorporating the patent-protected FIX-Padua variant for the […]

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


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