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News & Perspectives

Infusing Love: Remembering Sept. 11, 2001

September 18, 2019

Ver abajo para español I’m pretty sure everyone in Puerto Rico remembers where they were when they heard of the planes crashing on the twin towers in New York. I was at the Conservatory of Music of Puerto Rico, studying for my second bachelor’s degree in music. I was sitting in the hallway trying to […]

FDA Identifies Biomarker for Immune Response to FVIII Products Used to Treat Hemophilia A

September 17, 2019

The following is a press release from the FDA. Read the press release on the FDA website here. Scientists at the U.S. Food and Drug Administration developed a technique that enables them to determine whether immune system cells called dendritic cells appear primed to trigger the production of antibodies against Factor VIII (FVIII) products used to […]

Mes de la Herencia Hispana: La menstruación es un proceso natural

September 16, 2019

La menstruación es un proceso natural como cualquier otro. Por: Andy Anderson y Martha Boria “Ahora eres una mujer”. “Aquí están las toallas higiénicas”. “Puedes sostener una toalla de agua caliente en el estómago por los dolores”. ¿Suena esto familiar? Para muchos de nosotros, hablar de períodos era solo algo que podíamos hacer con mamá. […]

Dear Addy: Public Charge Rule

September 16, 2019

Dear Addy, I’ve seen HFA post on social media about changes to the public charge rule. What are the changes and how could they affect the bleeding disorders community? Signed, Concerned Advocate Dear Advocate, Para obtener información en español, haga clic aquí. Thanks for reaching out about this important and developing issue. As you may […]

Sigilon Therapeutics Receives Orphan Drug Designation for a Treatment of Hemophilia A

September 6, 2019

The following is a press release from Sigilon Therapeutics. Read the press release on the Sigilon website here. Sigilon Therapeutics has announced it has received Orphan Drug Designation for SIG-001, an investigational therapy for hemophilia A that leverages Sigilon’s Shielded Living Therapeutics™ platform to implant cells engineered to produce stable blood plasma levels of factor VIII, a crucial […]

Hemophilia Federation of America names VP of Advancement as Interim President and CEO

September 4, 2019

Sept. 3, 2019 After the recent resignation of long-time President and CEO, Kimberly Haugstad, Hemophilia Federation of America has named its Vice President of Advancement, Sharon Meyers, as interim President and CEO. Meyers, who began her role on Sept. 1, brings a wealth of experience to the position while HFA’s board of directors finds a […]

Washington Wire: August 2019

August 30, 2019

New rule causes concern over legal immigrants’ use of Medicaid and certain other public benefits En Español Patient groups representing millions of Americans with serious health conditions voiced strong concern about a U.S. Department of Homeland Security final rule released on August 12, 2019. The new rule directs DHS to broadly expand the “public charge” evaluation […]

August 30, 2019

UNA REGLA NUEVA CAUSA PREOCUPACIÓN SABRE EL USO DE MEDICAID Y CIERTOS OTROS BENEFICIOS PÚBLICOS POR INMIGRANTES LEGALES Grupos de pacientes que representan a millones de estadounidenses con condiciones de salud grave expresaron una gran preocupación por una reglamentación final emitida el pasado 12 de agosto de 2019 por el Departamento de Seguridad Nacional de […]

Infusing Love: Literally Driving Me Crazy!

August 29, 2019

One night I was cooking tacos for dinner. I was browning the beef and preparing to add the seasoning for the 10-minute simmer. I went to get the taco season package and the soft taco wraps out the pantry, when I realized I didn’t buy the soft taco wraps! There is nothing worse than realizing […]

FDA Issues a MedWatch Safety Alert Regarding Certain Hepatitis C Medications

August 28, 2019

The following is an excerpt from a FDA MedWatch Safety Alert. Read the full safety announcement here. FDA has received reports that the use of Mavyret, Zepatier, or Vosevi to treat chronic Hepatitis C in patients with moderate to severe liver impairment has resulted in rare cases of worsening liver function or liver failure. FDA […]

Joint Statement #4 on Recall of Bayer Kogenate® FS Lots

August 22, 2019

Hemophilia Federation of America and National Hemophilia Foundation continue to follow up on issues arising from Bayer’s distribution of mislabeled, expired clotting factor and subsequent recall of that product. The most recent set of joint HFA-NHF inquiries to Bayer focused on the short- and long-term medical consequences for affected patients. Bayer today released this response […]

Understanding FDA Drug Recall Procedures

August 19, 2019

It is important to pay attention when a product is recalled, but with all the different sources of information, and the different types of recalls, it can be confusing! The Food and Drug Administration follows several different recall procedures, outlined in the Regulatory Procedures Manual.[1] Recalls are used because they have the potential to be […]

Dear Addy: Off to College

August 19, 2019

Dear Addy, My family is active with our local bleeding disorders community, but now I am going to college in a different state. How do I find an organization near my school so I can remain involved as a community advocate in a new state and at the national level? Signed, Active Young Advocate Dear […]

Word From Washington: Patient Groups Release Statement on New Public Charge Rule

August 13, 2019

Patient groups representing millions of Americans with serious health conditions voiced strong concern about a U.S. Department of Homeland Security final rule released on August 12, 2019. The new rule directs DHS to broadly expand the “public charge” evaluation – which aims to determine whether an individual is likely to become dependent on the government […]

Joint Statement #3 on Recall of Bayer Kogenate® FS Lots

August 12, 2019

We recognize the recent recall from Bayer has caused deep concern and has been unsettling for many in the bleeding disorders community. As part of our ongoing discussion with Bayer, Hemophilia Federation of America and National Hemophilia Foundation have received the following letter and update regarding the recall of Kogenate FS. This letter includes Bayer’s […]

Intern Introspective: Dylan’s Experience

August 10, 2019

Hemophilia Federation of America’s Policy and Government Relations Internship has come to a close for 2019. Last week, Jasmin shared her thoughts on the summer and this week we hear from Dylan. HFA is very grateful for all of the work Jasmin and Dylan have completed in 10 short weeks. We can’t wait to see […]

Intern Introspective: Jasmin’s Experience

August 2, 2019

Earlier this summer we welcomed our summer policy and governmental relations interns to our D.C. office. Jasmin and Dylan are part of the bleeding disorders community and were chosen to participate in a 10-week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, Jasmin and Dylan […]

Washington Wire: July 2019

July 31, 2019

FEATURED STORIES Product recall announced; patient organizations are in ongoing communications with manufacturer Bayer announced the recall of two lots of Kogenate® FS antihemophilic factor (recombinant) 2000 I.U. vials on July 19, 2019. Bayer announced that 3000 I.U. of one product (Jivi), past its expiration date, had been mislabeled as another product (2000 I.U. of Kogenate […]

Joint Statement #2 on Recall of Bayer Kogenate® FS Lots

July 31, 2019

Bayer announced the recall of two lots of Kogenate® FS antihemophilic factor (recombinant) 2000 I.U. vials on July 19, 2019. Bayer announced that 3000 I.U. of one product (Jivi), past its expiration date, had been mislabeled as another product (2000 I.U. of Kogenate FS) and distributed to the public for six months. This is a deeply […]

Joint Statement on Recall of Bayer Kogenate® FS Lots

July 26, 2019

Last week, Bayer announced the recall of two lots of Kogenate® FS antihemophilic factor (recombinant) 2000 IU vials.That highly concerning announcement has raised many questions on the part of both national organizations and community members. The fact that one product (Jivi), past its expiration date, was mislabeled as another product (Kogenate FS) and distributed to the […]

Infusing Love: New Challenges

July 25, 2019

  Back in February Maddox’s provider suggested we try a new medicine. This medicine would allow him to be poked subcutaneously once a week, and with no need of factor replacement unless there is an emergency. After about six months on the new medication, we went in for Maddox’s yearly appointment, and removing his port […]

HFA Awarded PCORI Grant to Engage Women in Research

July 25, 2019

Hemophilia Federation of America has received a Eugene Washington PCORI Engagement Award from the Patient-Centered Outcomes Research Institute for its FIRST (Females in Research Sharing and Translation) Project to improve opportunities for women to be engaged in patient-centered research. The capacity-building grant will support HFA’s FIRST Project which will begin by identifying how women are […]

Word From Washington: District Court Upholds Rule about Short-Term Limited Health Plans

July 19, 2019

District Court Ruling Upholding Short-Term Health Insurance Rule Could Make Comprehensive Coverage Unaffordable; Leave Many Uncovered Patient groups representing millions of Americans with serious health conditions are voicing concern about access to affordable, comprehensive health coverage after U.S. District Court Judge Richard Leon today upheld an administration rule expanding access to short-term limited-duration (STLD) health plans. […]

Intern Introspective: Summer in D.C.

July 19, 2019

  Jasmin and Dylan have spent the past seven weeks busy working on projects in HFA’s office. When they are not attending briefings, researching and writing their policy projects, and participating in team meetings, they are getting to know Washington, D.C. In this week’s blog, Jasmin and Dylan share how they’ve made the most out […]

RECALL NOTICE: Bayer Voluntarily Recalling Factor 8 Product

July 19, 2019

The following is a press release from Bayer regarding a voluntary recall. PATIENTS SHOULD NOT USE THIS PRODUCT! Bayer is voluntarily recalling two lots of Kogenate® FS antihemophilic factor (recombinant) 2000 IU vials in the United States to the patient level. Certain vials from these two lots that were labeled as Kogenate FS actually contain […]

Infusing Love: Coming to Terms

July 18, 2019

  Omar was born in New Jersey, weighing close to 10 pounds. His second day at the hospital, I received the news of his hemophilia diagnosis. Initially, I felt isolated and alone and I did not know where to begin my search for information, assistance, understanding, and support. Despite that I had some knowledge because […]

Word From Washington: HFA Signs On to Letter Opposing Medicaid Block Grants

July 18, 2019

Patient Groups Express Strong Opposition to Medicaid Block Grants Proposals for Block Grants or Per Capita Caps in Medicaid Would Harm Patients with Serious and Chronic Health Conditions Today, 27 patient groups submitted a letter to Centers for Medicare and Medicaid Services (CMS) Administrator Seema Verma expressing strong opposition to policies that would allow states […]

SPECIAL PRESIDENT AND CEO ANNOUNCEMENT

July 16, 2019

Dear Bleeding Disorders Community — I want to let you know that I will be stepping down from HFA as your President and CEO at the end of August. Leaving HFA has been an incredibly difficult decision I have been wrestling with for about a year.  I love HFA but ultimately this is just the […]

Dear Addy: Back to School 2019

July 12, 2019

Dear Addy, My son has hemophilia and I’m nervous about his safety as he starts school this year. How can I advocate for him at school and make sure his bleeding disorder is understood? Signed, Nervous Nancy Dear Nervous, You are not alone — many families struggle with this experience! Taking a proactive approach to […]

Genentech Presents Data for Hemlibra at the ISTH 2019 Congress

July 10, 2019

The following is an excerpt from a press release from Genentech. Read the press release in its entirety here. Genentech, a member of the Roche Group, announced today new data for Hemlibra® (emicizumab-kxwh) across multiple pivotal studies in people with hemophilia A with and without factor VIII inhibitors at the International Society on Thrombosis and […]


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