Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
Patient and health advocacy groups representing millions of Americans with pre-existing conditions filed an amicus curiae or friend of the court brief urging the U.S. Supreme Court to immediately take up the case of Texas v. United States. The case is the latest court challenge to the health care law known as the Affordable Care […]
Wow, it鈥檚 the end of the year and the end of a decade! I am not leaving this decade the way I began. My decade began with a 7-year-old son with severe hemophilia A, who I wouldn鈥檛 allow to play recreational sports. I was pregnant with twins, one being a boy, unsure if I was […]
Twenty-four organizations representing millions of patients strongly support the petitions filed today by state attorneys general and by the U.S. House of Representatives that seek expedited U.S. Supreme Court review of last month鈥檚 Texas v. United States ruling.聽 The coalition issued the following statement:聽 鈥淥ur organizations, representing millions of individuals and families affected by chronic […]
WASHINGTON, D.C. 鈥 Hemophilia Federation of America announced the board of directors has selected Sharon Meyers, M.S., CFRE, as president and chief executive officer, effective Jan. 16, 2020. Meyers is a strategic, energetic, action-oriented nonprofit leader who has been part of HFA鈥檚 leadership team for more than four years, most recently serving as the vice […]
On December 18, 2019, the U.S. Fifth Circuit Court of Appeals issued its long-awaited ruling in Texas v. United States, a case challenging the constitutionality of the Affordable Care Act. The 5th Circuit ruling upholds (in part) an earlier lower court decision that declared the ACA to be unconstitutional, due to Congress鈥 2017 enactment of […]
The following is an excerpt from a recent communication from the United States Food and Drug Administration. Read the full communication here: The Food and Drug Administration (FDA) would like to remind the public that individuals who have ever tested positive for HIV (the virus that causes AIDS) should not donate blood, because of the […]
Last Wednesday evening, the U.S. Fifth Circuit Court of Appeals issued a ruling in Texas v. United States, a case challenging the constitutionality of the Affordable Care Act. The bleeding disorders community has been anxiously awaiting this pivotal court decision. HFA staff want to update you on what is known at this point. The 5th […]
Patient advocacy groups representing millions of Americans with serious health conditions decried a December 18th聽ruling from the Fifth Circuit U.S. Court of Appeals in Texas v. United States, a case concerning the constitutionality of the Affordable Care Act. The Fifth Circuit ruling strikes down the ACA鈥檚 individual mandate and sends the case back to the […]
Do you remember the first time you heard about HIV or AIDS? Now it鈥檚 common to hear of it and you probably know people that have HIV. It was the early ’80s when I first heard of HIV, there wasn鈥檛 even a name for it yet. I was sitting in my truck during a […]
Meet Orlando Vives | Team聽Asociaci贸n Puertorrique帽a de Hemofilia My name is Orlando Vives and I am a member of the Asociaci贸n Puertorrique帽a de Hemofilia. When starting out the challenge I honestly thought I would need to step up how much exercise I did in a day, but I was rather surprised to find the amount […]
Meet Eduardo Rodriguez | Team Asociaci贸n Puertorrique帽a de Hemofilia I鈥檓 the public relations coordinator for Asociaci贸n Puertorrique帽a de Hemofilia and part of the APH team for HFA鈥檚 Journey to Healthier joints challenge. As a von Willebrand patient I have never had any serious issues besides one of my knees. For that reason and also my […]
Meet John Faria | Team Captain | Team Oklahoma Hemophilia Foundation My name is John Faria and I am a big fan and proponent of HFA and the Blood Brotherhood program! I鈥檝e had the pleasure of being Oklahoma Hemophilia Foundation鈥檚 Men鈥檚 Committee Lead until this past November, where I am hanging up the reigns after […]
Dear Addy, With the 2020 elections less than a year away, I鈥檇 like to become more informed about the candidates鈥 positions on health reform issues. Can you recommend resources to find and compare information? Signed, Informed Voter Dear Voter, Health reform will continue to be a critical issue for 2020 candidates, as it was during […]
HFA joined with other national patient and consumer groups to issue a number of statements on important health policy topics this week. HFA and 26 other national groups applauded news of a bipartisan agreement on surprise medical billing聽between the Senate Committee on Health, Education, Labor, and Pensions and the House Committee on Energy and Commerce […]
Meet Matthew Tach茅 | Team Hemophilia Foundation of Oregon We are pleased to feature our member organization, Hemophilia Foundation of Oregon, a participant in Your Journey to Healthier Joints Activity Challenge. In this video, HFO team member, Matthew Tach茅, tells us about the workout routine he uses to strengthen his joints and reduce bleeds. […]
Meet Kevin Finkle | Team聽Bleeders of the Great Northwest Kevin is the team leader for Bleeders of the Great Northwest. He shares the unique way he gets exercise:聽鈥淗ere is a video of me getting exercise while practicing with my African marimba band, White Rhino Marimba.聽Exercise doesn’t have to happen in a gym, it is important […]
Open Enrollment for 2020 insurance plans ends soon 鈥 don鈥檛 miss out! The Open Enrollment Period聽for 2020 insurance plans ends soon for Medicare plans, for individual insurance plans (in most states), and for many employer health insurance programs. It is important to take action during this timeframe to assure you have health coverage for 2020. […]
Meet Tim Wicks | Team Hemophilia Foundation of Michigan I am the Director of Camp Bold Eagle and the Youth Services Manager at the Hemophilia Foundation of Michigan. I also have severe hemophilia A and am on the HFM team for HFA’s Journey to Healthier Joints challenge. I was doing really well with getting my […]
My dad taught me how to box and dance salsa; with these two skills鈥攕alsa and boxing鈥擨 learned how to defend myself and to never give up. I learned to always take notes on movements and to dance my way to resilience. Have you ever had the biggest hiccup that you just couldn鈥檛 get rid of? […]
I never thought this day would come鈥. When Myles was first diagnosed with hemophilia A, I knew we had a long road ahead of us. Doctor appointments and worrying about safety both inside and outside of school, could always be scary. However, the scariest was the responsibility of making sure Myles always had the correct […]
Bullying has no shame. It shows no prejudice. Bullying affects anyone of any size, age, and ethnicity.聽 It affects all of us. When I watch grown people intentionally hurt each other with words and actions, it always surprises me. One day I asked a young lady why she was making fun of her coworker. […]
Open Enrollment begins for 2020 insurance plans. The Open Enrollment Period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 […]
Dear Addy, I keep seeing reminders about open enrollment beginning November 1, 2019. As a person with a bleeding disorder, what should I look for in an insurance plan? Signed, Investigating Insurance Dear Investigator, The聽Open Enrollment Period聽is a time frame each year when health insurance plans or聽HMOs (health maintenance organizations)聽are required by law to accept […]
Over the last several years, I have been focused on the idea of transition and independence as Thomas speeds through his adolescence. While he will always be my little boy, I simply have to face the facts that this six-foot, 16-year-old will be making decisions for himself and his healthcare in short order. There have […]
Dear Addy, I am a Medicare beneficiary weighing my plan options for 2020. What do I need to know about choosing a plan for the coming year? Medicare Beneficiary Dear Beneficiary, Every year Medicare open enrollment runs from Oct. 15 through Dec. 7. This is the time of year when you can decide to stay […]
October is National Bullying Prevention Month. For older moms, we think of bullying happening at school and after school in the neighborhood. But the unfortunate reality is that there is now the addition of bullying at home through social media and texts.聽 Historically, many have referred to bullying as a 鈥渃hildhood rite of passage.鈥 […]
On October 16, 2019, Genentech sent the following letter to HFA and NHF. Genentech鈥檚 letter responds to questions posed in the joint HFA-NHF letter of October 11, regarding reports of particulate matter in vials of Hemlibra. HFA and NHF will keep the bleeding disorders community informed as further information develops. Please note that HFA and […]
CSL Behring has advised HFA and NHF of a printing misalignment on the label of its Humate P product for von Willebrand disease. You can read CSL Behring鈥檚 statement, and see images of the product box,聽below. While the current Humate P notification is prompted by a printing error on the outside of the box, NHF […]
Hemophilia Federation of America and National Hemophilia Foundation continue to follow up on issues arising from Genentech鈥檚 recent announcement regarding reports of particulate matter in vials of Hemlibra. You can read comments on the聽statement from NHF鈥檚 Medical and Scientific Advisory Council (MASAC). Today HFA and NHF sent Genentech a letter with additional questions, which you […]
The following is a press release from Octapharma. Read the press release in its entirety here. Octapharma USA today announced the U.S. Food and Drug Administration (FDA) has approved WILATE庐 for treatment of adults and adolescents with hemophilia A for routine prophylaxis to reduce the frequency of bleeding episodes and on demand treatment and control […]
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