Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
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 […]
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 […]
Our son, Michael, recently surprised us with the news that he was going to get a tattoo! I know, I know, he is 26 years old and can make his own decisions.聽But he still has severe hemophilia B with inhibitors. I got that knot in my stomach that all moms get 鈥 it鈥檚 a […]
Earlier this month, HFA introduced you to Jasmin and Dylan, our summer Policy and Government Relations Interns. Jasmin and Dylan have been busy in D.C., attending congressional hearings and learning the ropes of working for a national nonprofit organization. During their second week, Jasmin and Dylan experienced first-hand the planning and execution of our sixth […]
I have to admit this blog gave me extreme anxiety about writing.聽Not in the respect that my father (Thomas Gibson), my husband (Alan) nor my father-in-law (James Hooper) are horrible fathers. It鈥檚 just very difficult to express my absolute gratitude to these individuals.聽These three fathers and grandfathers play such an important and vital role both […]
Hemophilia Federation of America is pleased to introduce our Summer 2019 Policy and Government Relations Interns, Jasmin Wyatt and Dylan Edwards. As members of the bleeding disorders community, they understand the mission of HFA firsthand. Jasmin and Dylan were selected for the internship because of their leadership qualities and interest in the field of policy […]
Featured Story: CMS decides against allowing Medicare plans to limit coverage of 鈥減rotected class鈥 drugs. This past month brought some welcome news from the U.S. Centers for Medicare and Medicaid Services. On May 16, CMS released a final rule on drug pricing in the Medicare Advantage and Medicare Part D programs. In that final rule, […]
This blog is translated in English below. Este pasado d铆a de las madres celebr茅 mi a帽o n煤mero 23 de ser madre. 隆No s茅 ni como esto pas贸 tan r谩pido! En una pesta帽ar de ojos mis hijas han crecido y se han independizado, pero soy una mam谩 muy feliz. Criar a hijas involucra mucho tiempo […]
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