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NHF Plans to go Virtual with Annual Meeting

May 1, 2020

The following is a statement from the National Hemophilia Foundation regarding their annual meeting. The National Hemophilia Foundation鈥檚 priority has always been the health and safety of the bleeding disorders community. As the COVID-19 pandemic unfolds, it is clear that in the face of an unprecedented situation, we need to make difficult decisions to protect […]

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 […]

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.聽 “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聽

April 27, 2020

Below is a letter from Takeda. “To our valued patients, customers and other stakeholders,聽 As the COVID-19 crisis continues to unfold, Takeda鈥檚 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.聽 Consistent with our […]

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 […]

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 […]

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 […]

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 […]

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, […]

Pfizer and BioNTech to Co-Develop Potential COVID-19 Vaccine

March 17, 2020

The following is information provided by Pfizer and BioNTech. On March 13, 2020, Pfizer issued a five-point plan calling on the biopharmaceutical industry to join the company in committing to collaboration to combat COVID-19. 聽Pfizer Inc. and BioNTech announced that the companies have agreed to a letter of intent regarding the co-development and distribution (excluding […]

IXINITY Statement on Product Availability

March 17, 2020

The following is information provided by IXINITY. Read the full statement here. “The health and safety of individuals who rely on our products, their caregivers and community members, healthcare professionals, and our own team is of upmost importance to Medexus Pharma, the company behind IXINITY.聽 We want to reassure the community that we currently do […]

COVID-19 and Bleeding Disorders: Frequently Asked Questions

March 17, 2020

Many bleeding disorders community members are concerned about medical care, doctor visits, and how living with a bleeding disorder is being complicated by COVID-19. We address some of the most frequently asked questions: Q: We have an appointment scheduled with our HTC next week. Should we still go? A:聽All patients/caregivers should contact their HTC or […]

Coronavirus (2019-nCoV) Update #3

March 12, 2020

On March 11, 2020, the World Health Organization announced that it is classing COVID-19 as a pandemic, and repeated its call for countries to take urgent and aggressive action to control the spread of the virus. Also on March 11, 2020, PPTA updated its statement on coronavirus and the safety of plasma protein therapies, noting […]

HFA Staff to Work from Home

March 12, 2020

UPDATE: As of March 27, 2020, HFA staff will work from home until April 30, 2020. Beginning March 16, Hemophilia Federation of America staff who currently work in the Washington, D.C., office will begin working from home until further notice.聽 HFA can assure the bleeding disorders community this will not interrupt communication 鈥 all phones […]

HFA Temporarily Halts All Staff Travel

March 11, 2020

UPDATE: As of March 27, 2020, HFA will halt travel for HFA staff until April 30, 2020. As the nation continues to respond to an outbreak of coronavirus (COVID-19), Hemophilia Federation of America has made the difficult decision to temporarily halt all travel plans of our staff throughout the month of March.聽 While we had […]

Bayer Statement on Availability of Factor VIII Products Amid 2019-nCoV (Novel Coronavirus)

March 5, 2020

Bayer has issued the following statement regarding the supply and availability of Bayer’s Factor VIII/Hemophilia A products in the wake of the聽2019-nCoV (novel coronavirus) outbreak:

Coronavirus (2019-nCoV) Update #2: MASAC Statement

March 5, 2020

On March 3, 2020, NHF鈥檚 Medical and Scientific Advisory Committee (MASAC) published a letter to the community regarding the evolving coronavirus outbreak. MASAC鈥檚 letter seeks to 鈥減rovide some interim guidance for the bleeding disorders community,鈥 directs people to the CDC website as a reliable source of information, and highlights some information regarding product supply and […]

HFA Symposium & the Impact of Coronavirus

March 4, 2020

SYMPOSIUM 2020 HAS BEEN POSTPONED鈥擱EAD THE ANNOUNCEMENT HERE As the nation responds to an outbreak of a respiratory illness caused by a novel coronavirus (COVID-19), HFA is closely monitoring the situation and evaluating steps that need to be taken to best prepare to host its upcoming annual patient Symposium on April 23-25, 2020 in Baltimore, […]

Genentech Statement on Hemlibra Supply Amid 2019-nCoV (Novel Coronavirus)

February 28, 2020

Genentech has issued the following statement regarding the supply and availability of Hemlibra in the wake of the聽2019-nCoV (novel coronavirus) outbreak: Please note that HFA does not recommend, endorse or make any representation about the efficacy, appropriateness or suitability of any specific products, treatments, or opinions. If you have any questions or concerns about your […]

Washington Wire: February 2020

February 28, 2020

Click Below to Translate Page to Spanish. Federal insurance rules proposed for 2021 Plan Year. Every year, the U.S. Department of Health and Human Services publishes a federal rule (the 鈥淣otice of Benefits and Payment Parameters,鈥 or NBPP) to govern operations of the ACA marketplaces and ACA health plans for the coming year. The 2021 […]

Coronavirus (2019-nCoV) Outbreak Update

February 6, 2020

The U.S. Centers for Disease Control and Prevention (CDC) are closely monitoring an outbreak of respiratory illness caused by a new coronavirus first identified in Wuhan, China. The new coronavirus (scientific identifier: 2019-nCoV) has resulted in thousands of confirmed cases in China; additional cases have been identified in other countries. As of February 3, 2020, […]


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