Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
New rule causes concern over legal immigrants鈥 use of Medicaid and certain other public benefits En Espa帽ol Patient groups聽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 鈥減ublic charge鈥 evaluation […]
UNA REGLA NUEVA CAUSA PREOCUPACI脫N SABRE EL USO DE MEDICAID Y CIERTOS OTROS BENEFICIOS P脷BLICOS POR INMIGRANTES LEGALES Grupos de pacientes que representan a millones de estadounidenses con condiciones de salud grave expresaron una gran preocupaci贸n por una reglamentaci贸n final emitida el pasado 12 de agosto de 2019 por el Departamento de Seguridad Nacional de […]
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鈥檛 buy the soft taco wraps! There is nothing worse than realizing […]
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 […]
Hemophilia Federation of America and National Hemophilia Foundation continue to follow up on issues arising from Bayer鈥檚 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 […]
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, 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 […]
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 鈥減ublic charge鈥 evaluation 鈥 which aims to determine whether an individual is likely to become dependent on the government […]
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鈥檚 […]
Hemophilia Federation of America鈥檚 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鈥檛 wait to see […]
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 […]
FEATURED STORIES Product recall announced; patient organizations are in ongoing communications with manufacturer Bayer announced the recall of two lots of Kogenate庐聽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 […]
Bayer announced the recall of two lots of Kogenate庐聽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 […]
Last week, Bayer announced the recall of two lots of Kogenate庐聽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 […]
Back in February Maddox鈥檚 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鈥檚 yearly appointment, and removing his port […]
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鈥檚 FIRST Project which will begin by identifying how women are […]
District Court Ruling Upholding Short-Term Health Insurance Rule聽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. […]
Jasmin and Dylan have spent the past seven weeks busy working on projects in HFA鈥檚 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鈥檚 blog, Jasmin and Dylan share how they鈥檝e made the most out […]
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庐 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 […]
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 […]
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 […]
Dear Bleeding Disorders Community 鈥 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.聽 I love HFA but ultimately this is just the […]
Dear Addy, My son has hemophilia and I鈥檓 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 鈥 many families struggle with this experience! Taking a proactive approach to […]
HFA continues to monitor the Texas v. United States case, in which a U.S. district court declared that the entire Affordable Care Act is unconstitutional by virtue of Congress鈥檚 2017 repeal of the ACA鈥檚 individual mandate tax penalty. The district court ruling has been appealed by California and 19 other states, along with the U.S. […]
Hemophilia Federation of America is committed to transparency, a fact recently recognized when the organization received a four-star rating by Charity Navigator and a Platinum Seal of Transparency by GuideStar, two respected nonprofit watchdogs. With an annual operating budget of more than $6 million, HFA relies on a diversity of funding sources and is […]
The midway point of our Policy and Government Relations Internship is an excellent time for Jasmin and Dylan to reflect on the first five weeks of their internship. In this blog post, they break down what an average week looks like for them as HFA interns and what the rest of the summer holds. Jasmin: […]
Winter weather has always raised my hemophilia mom radar. Icy sidewalks make me very nervous and I鈥檝e yelled out, 鈥淚ce ahead,鈥 many times over the last 15 years in warning to Thomas. But as we all know, we can鈥檛 be with our kids all day, every day and accidents are bound to happen. […]
Dear Addy, I recently saw HFA post on Facebook about an advocacy day on Capitol Hill. I wasn鈥檛 able to participate on the day of the event; can I still get involved? Signed, Advocacy Amplified Dear Advocacy, Yes! The posts you saw were in conjunction with HFA鈥檚 annual Patient Fly-in and Virtual Hill Day on […]
Featured Stories: HFA held a Patient Fly-in and Virtual Hill Day聽on June 10, 2019. Twenty-four community members from 14 different states came to Washington, D.C. to tell their lawmakers about living with bleeding disorders 鈥 and to explain what people in our community need in terms of quality, affordable health coverage. Fly-in participants also urged […]
The following is an excerpt of a press release from Bayer. Read the press release in its entirety here. Bayer will present new data highlighting clinical outcomes from its hemophilia A portfolio, which include long-term data from the PROTECT VIII investigational study evaluating use of Jivi庐 antihemophilic factor (recombinant) PEGylated-aucl. These data will be presented […]
Sign up for E-mails, Dateline Magazine, and other ways to stay connected.
CONTACT HFA
999 N Capitol Street NE Suite 201
Washington, D.C. 20002
Phone: 202.675.6984
Toll Free:
Fax: 202.675.6983
Email: info@hemophiliafed.org
HELPFUL LINKS
FOLLOW HFA
CERTIFICATIONS
