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News & Perspectives

Washington Wire: September 2019

September 30, 2019

The drug pricing debate in Washington resumed when Congress returned from its summer recess – though many observers question whether Congress will be able to pass legislation this year, due to policy disagreements between the majority and minority parties; the short period of time available before the 2020 elections; and the spillover effects of the impeachment […]

Bayer Responds to HFA-NHF Letter

September 27, 2019

On Sept. 27, 2019, Bayer sent the following letter and pharmacovigilance summary to HFA and NHF. Bayer submitted these materials in response to a joint HFA-NHF letter, part of the ongoing dialog over Bayer’s distribution and subsequent recall of two lots of improperly labeled, expired clotting factor. Please note that NHF and HFA do not recommend, endorse […]

Genentech Patient Foundation Responds to HFA-NHF Letter

September 27, 2019

On September 24, 2019, HFA and NHF sent a letter to Genentech and MedVantx regarding the shipment of incorrect length injection needles to patients who receive Hemlibra through the Genentech Patient Foundation. The Genentech Patient Foundation responded to our inquiries by letter dated September 25, 2019. You can read their response here. HFA and NHF will update the […]

Infusing Love: La comunicación con nuestros hijos e hijas

September 25, 2019

  Tener una buena comunicación con nuestros hijos e hijas no siempre es fácil.  Para esto es imprescindible saber estilos adecuados de comunicación para conocer a nuestros retoños más, para saber lo que piensan, para entenderlos más y para saber cómo se sienten.  De hecho, la comunicación entre padres e hijos es esencial para fomentar […]

Joint Statement #1 on Genentech Patient Foundation/Medvantx Needle Error

September 24, 2019

Late in the day on Friday, September 20, 2019, Genentech informed HFA and NHF that a contracted specialty pharmacy, Medvantx, had shipped incorrect length injection needles to patients who receive Hemlibra through the Genentech Patient Foundation. HFA and NHF posted that notice on September 21st. Today we followed up with a letter to Genentech and […]

Mes de la Herencia Hispana: Salud Mental en Hombres Latinos con Hemofilia, una Realidad Invisible

September 24, 2019

En pleno siglo 21 luchamos con la pobre educación y conocimiento que se tiene sobre la Hemofilia u otras enfermedades crónicas padecidas en hombres. A esto le sumamos las creencias sobre roles y masculinidades que invitan a los hombres a no atender su estado de salud emocional. Existe un discurso social predominante a través de […]

Joint Statement #5 on Recall of Bayer Kogenate® FS Lots

September 23, 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 […]

Genentech Patient Foundation/Medvantx Announce Ancillary Safety Issue

September 21, 2019

HFA has received the following notice from Genentech regarding the shipment of incorrect length injection needles to patients who receive Hemlibra through the Genentech Patient Foundation: “We were recently informed that ancillary supplies shipped by a specialty pharmacy, Medvantx, to a specific group of patients receiving Hemlibra through the Genentech Patient Foundation contained incorrect length injection […]

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 […]


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