Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
Hola, mis amigas de Infusing Love Moms Blog. Soy Ana, madre de un hijo con hemofilia Tipo B, deficiencia de Factor IX moderado y vivo en El Paso, Texas. Hoy quiero platicar con ustedes de el amor, el agradecimientoy el perd贸n. El amor es, quiz谩, el sentimiento mas hermoso que el ser humano pueda experimentar. […]
More than a dozen patient groups representing millions of Americans with serious and chronic health conditions are urging the U.S. District Court for the Southern District of New York to preserve protections in the Affordable Care Act (ACA) for lesbian, gay, bisexual, transgender and queer (LGBTQ) patients receiving health care services and restore translation notices […]
HFA鈥檚 virtual 2020 Patient Fly-in took place over the week of Nov. 16.聽 Sixteen community members connected with their lawmakers via phone and Zoom to describe what it鈥檚 like to live with a bleeding disorder 鈥 and to explain what people in this community need in terms of quality, affordable health coverage. Fly-in participants also […]
With the pandemic and economic crisis still very present in our lives, a message of gratitude could be seen as a clich茅. Instead, they are at the core of my emotions as I tell you how thankful I am for this community. It is with sincerity that I wish you a happy Thanksgiving and express […]
I have been 鈥淚nfusing Love鈥 into my son Marques for the past 18 years! I have not only been infusing him with factor, so his blood clotting levels are normal, but I have tried to infuse him with the education he needs to live a long life with hemophilia. I pray! As hemophilia moms, […]
The following is from a press release from Pfizer. Read it in its entirety here. Pfizer Inc. announced that the first participant has been dosed in the Phase 3 BASIS study of marstacimab (PF-06741086), an anti-tissue factor pathway inhibitor (anti-TFPI) being evaluated for the treatment of people with severe hemophilia A or B, with or […]
The following is an excerpt from a press release from uniQure. Read the press release in its entirety here. uniQure N.V.,聽a gene therapy company advancing transformative therapies for patients with severe medical needs, announced positive top-line data from its pivotal, Phase III HOPE-B gene therapy trial of etranacogene dezaparvovec, an investigational adeno-associated virus five (AAV5)-based […]
Dear Addy, I know that open enrollment for health insurance begins Nov. 1, 2020. At the same time, I鈥檓 hearing about a Supreme Court case that could overturn the Affordable Care Act (ACA)! As a person with a bleeding disorder, what should I do about health insurance for 2021? Signed, Anxious About Insurance Dear Anxious, […]
Due to ongoing concerns regarding public gatherings and the impact COVID-19 had on in-person legislative visits, Hemophilia Federation of America restructured its annual Patient Fly-In and Congressional Reception experience to an online campaign that took place over the course Nov. 16-20. With that in mind, Congressional visits by patients took place virtually over Nov. 19-20. […]
Protections for Pre-Existing Conditions and Coverage Standards at Risk Twenty patient groups representing millions of Americans with pre-existing conditions are urging the U.S. Supreme Court to prioritize patient protections, including those for people with pre-existing conditions, when it hears oral arguments Tuesday in the case of California v. Texas (previously Texas v. United States). 聽The […]
The following is information from the World Federation of Hemophilia, European聽Hemophilia Consortium, and the National Hemophilia Foundation. The WFH, EHC and NHF have learned of and subsequently confirmed a decision by Sanofi Genzyme to initiate a voluntary sponsor-led global dosing hold on its full clinical development program for fitusiran due to the identification of new […]
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” -Margaret Mead To find an example of the type of group Margaret Mead speaks about in her famous quote, look no further than our bleeding disorders community. From the 1990s with the passage […]
On October 30th, 2020, the Institute for Clinical and Economic Review (ICER) held a public meeting to discuss its evidence report on therapies for hemophilia A. ICER is an independent and non-partisan research organization that evaluates the clinical and economic value of prescription drugs, medical tests, and other healthcare and healthcare delivery innovations. For this […]
Open Enrollment begins for 2021 insurance plans Open Enrollment聽is a time frame each year when health insurance plans聽are required by law to accept applications from聽new plan聽enrollees regardless of their health history. This also is the time when you can choose to stay with your existing health plan if it is the right one for you. […]
Remote learning causes concerns for students with disabilities.聽Because of COVID-19, I found myself using technology as I teach and learn.聽I used to take for granted toilet paper, paper towel, hand sanitizer, rubber/paper gloves, rubbing alcohol, bleach and masks because it was always there at my reach. Now I have found myself shopping for these things. […]
There are new bleeding disorder side effects cropping up all the time. By side effects, I mean the extraneous things we have to manage such as insurance, genotyping and product choice. In a time before all the advancements, a side effect was learning to be an IV nurse and find a vein on a toddler,聽 […]
Dear Addy, It鈥檚 been an extremely stressful year due to COVID-19. Elections are coming up fast and I鈥檓 not sure what steps I need to take to vote. Any help? Ready To Vote Dear Ready, I agree this year has presented a lot of new challenges for everyone and learning new ways to cope. As […]
Since March 2020 we have had to get used to a new reality where taking care of our kids鈥 already special health situation has turned even more complicated. How to handle frequent visits to the hospital if the hospital doesn鈥檛 seem like a safe place? Doing virtual schooling had to grow on us, but we […]
A coalition of 33 organizations representing millions of people with pre-existing conditions today released a blueprint listing their top health care priorities for the next Administration. The report elevates the collective voices of patients and urges elected officials to ensure all people living in the United States, including those with pre-existing conditions, have access to […]
The following is an excerpt from an update from CSL Behring regarding the availability of Stimate Nasal Spray. Read the update in its entirety here. Ferring Pharmaceuticals Inc. initiated a voluntary, consumer-level recall of all batches of Stimate庐 Nasal Spray (desmopressin acetate) 1.5 mg/mL, which is distributed and sold by CSL Behring LLC.聽 At this […]
Dear Addy, One of my favorite things to do is to learn about different health policies and legislation that impacts people living with a bleeding disorder. Right now, I have been limited to only information I can find in my state and Congress. I would like to learn more about what goes on in […]
Update on ACA lawsuit The death of eminent Supreme Court justice Ruth Bader Ginsburg on September 18th brought renewed attention to the fate of the Affordable Care Act. As previously reported, a lawsuit challenging the constitutionality of the ACA (California v. Texas) is pending in the Supreme Court. Because Justice Ginsburg was considered a likely […]
Mi relaci贸n con la hemofilia empez贸 muy temprano en mi vida. Conservo muchos recuerdos, episodios que aun hoy d铆a los tengo grabados en mi memoria. Me llega la imagen de mi padre (que ten铆a hemofilia severa A) acostado en una cama o sentado en una silla teniendo mucho dolor, sin poder caminar y a veces […]
Policy and advocacy work is increasingly important at the state level. In an effort to keep you informed about the work happening on the ground at the local level, HFA is debuting a quarterly update, “State of the States.” Stay up-to-date and read about the work happening close to you! The COVID emergency has upended […]
As a part of the HFA Policy and Government Education internship, the interns are tasked with creating a final capstone project encompassing what they have learned, culminating in the creation of advocacy and policy programming that is aimed at a young adult audience. The capstone is fully intern-driven, from concept to execution, with support […]
CSL Behring issued the following statement to patient advocacy groups: “CSL Behring is focused on delivering breakthrough therapies to improve patients鈥 lives and meet the changing needs of our patients. Since CSL Behring鈥檚 introduction of MONONINE庐 Coagulation Factor IX (Human) in 1992, advancements have been made for the treatment of Hemophilia B.聽 Over time, patients […]
Hemophilia Federation of America and the National Hemophilia Foundation continue to follow up on issues arising from the recent recall of Stimate (desmopressin) nasal spray, which is manufactured by Ferring Pharmaceuticals and distributed in the United States by CSL Behring. On September 3, HFA, NHF and the Hemophilia Alliance sent a new joint letter to […]
By Will Hubbert As sad as it is to write, my time as an intern at HFA has come to an end. I鈥檝e loved my time here, so I want to use this last reflection as an opportunity to thank my mentors and recommend the program. HFA鈥檚 internship is a truly amazing experience, and […]
On September 1, 2020, HFA and NHF learned that Mylan N.V. is conducting a voluntary nationwide recall of聽 four lots of Tranexamic Acid Injection, USP 1000 mg/10 mL, packaged in cartons of 10 single-dose 10 mL vials. Tranexamic acid injection is indicated in patients with hemophilia for short term use to reduce or prevent hemorrhage […]
Policy and advocacy sessions sparked robust discussions at HFA鈥檚 recently concluded 2020 Symposium! Thank you to all who attended 鈥 it was wonderful to 鈥渟ee鈥 you at our virtual event. For those who couldn鈥檛 join us in real time, you can still view the recorded sessions on your own schedule for the next few months […]
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