Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
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 […]
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 […]
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 […]
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 […]
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 […]
Dear Addy, This will be my first year going off to college and I鈥檓 a little bit nervous about it. The prospect of traveling hundreds of miles away from home and my HTC was already daunting, and COVID has only made this big transition feel even bigger. What can I do to make […]
Click Below to Translate Page to Spanish. On July 21, 2020, Ferring Pharmaceuticals issued a voluntary recall of Stimate (desmopressin) nasal spray due to 鈥渟uperpotency鈥 鈥 in other words, amounts of desmopressin being higher than specified. Stimate is used to treat von Willebrand disease (VWD) and mild hemophilia A. It is licensed and distributed […]
Click Below to Translate Page to Spanish. Product recall announced On July 21, CSL Behring and Ferring Pharmaceuticals announced a聽recall聽of multiple lots of Stimate (desmopressin),聽in the United States and in other countries around the world. The recall was prompted by the manufacturer鈥檚 discovery of out-of-specification levels of the active ingredient in the marketed product. This聽announcement […]
Dear Addy, My high school sweetheart and I are in our senior year of college and recently began a conversation about life after school. Are there any resources for us to learn more about starting a family when you know you are a carrier or have a history of bleeding disorders in your family?聽 Signed, […]
Earlier this summer, we introduced you to Will and Tameelah, our summer Policy and Government Education interns. Both young adults have been active in their local bleeding disorders community and are passionate about keeping their peers involved. This week we asked Tameelah and Will to share how they want to make their mark in our […]
U.S. Department of Health and Human Services releases rule paring back anti-discrimination provisions On June 12th, the HHS Office of Civil Rights released a final rule聽re-interpreting anti-discrimination provisions of the Affordable Care Act. The new rule removes explicit patient protections against discrimination by health care providers and insurers. HFA joined with twenty-eight other patient and […]
My name is Tameelah Dawson. I am 21 years old from Lexington, S.C., and currently a senior at Claflin University in Orangeburg, S.C., pursing a bachelor鈥檚 degree in psychology. I have been heavily active in the hemophilia community for well more than five years. I鈥檝e served as a junior board member for Hemophilia South Carolina […]
HFA joined with twenty-eight other patient and health advocacy groups to issue the following statement 聽regarding a final rule released by the U.S. Office of Civil Rights/HHS on Friday, June 12th. The rule, interpreting anti-discrimination provisions of the Affordable Care Act, removes explicit patient protections against discrimination by health care providers and insurers. The groups鈥 […]
Dear Addy, Each year, I travel to Washington, D.C., and my state capitol to meet with my legislators and members of Congress to discuss issues that are most important to the bleeding disorders community. Due to COVID-19, I have heard that in-person visits are no longer viable options. How can I make sure my voice […]
Click Below to Translate Page to Spanish. Federal rule allows health plans to discount manufacturer copay assistance. On May 7, 2020, the U.S. Department of Health and Human Services finalized a rule that affects individuals who rely on聽patient copay assistance programs. The HHS rule (the 鈥2021 Notice of Benefits and Payment Parameters,鈥 or NBPP) allows […]
Dear Addy- I recently learned I am eligible to receive an Economic Impact Payment or 鈥渟timulus check鈥. While I have not received any funds yet, I have received several voicemails stating that I am required by law to provide personal banking information, my social security number and pay a fee before I can receive any […]
Patient and health advocacy groups representing millions of Americans with pre-existing conditions filed an聽amicus curiae or friend of the court brief urging the U.S. Supreme Court to uphold the Affordable Care Act in the case of聽California v. Texas (previously Texas v. United States). The case is on appeal from lower court decisions invalidating (in whole […]
Late yesterday, the U.S. Department of Health and Human Services finalized a rule that affects individuals who rely on patient copay assistance programs. The HHS rule (the 鈥2021 Notice of Benefits and Payment Parameters,鈥 or NBPP) allows health insurers to continue using accumulator adjusters. This means that a health insurer can exclude manufacturer copay assistance […]
Over the month of April, the COVID-19 emergency continued to dominate Americans鈥 lives 鈥 and lawmakers鈥 agendas. Here are some of the month鈥檚 developments. A fourth COVID relief bill was signed into law on April 24th. R. 266 replenishes the Paycheck Protection Program (established in the March CARES Act but quickly depleted) with an additional […]
Public Comments Sought Over Next 30 Days The National Hemophilia Foundation (NHF) and Hemophilia Federation of America (HFA) are seeking comments from the bleeding disorders community on the executive summary of the NHF/HFA Safety Summit convened in Washington, DC, on January 29-30th, 2020. The summit brought together stakeholders from across the bleeding disorders community, including […]
Click Below to Translate Page to Spanish. STATEMENTS AND UPDATES During this time of rapidly-changing news surrounding the COVID-19 outbreak, HFA聽will continue to publish updates and information about COVID-19 and its effects on the bleeding disorders community. MEDICAL NEWS INDUSTRY NEWS & PRODUCT AVAILABILITY NATIONAL, GOVERNMENT AND LOCAL NEWS RESOURCES FAQ: BLEEDING DISORDERS AND COVID-19 […]
Dear Addy- Like many others, I have been laid off of work due to COVID-19. I鈥檓 supposed to receive pandemic unemployment assistance through the CARES Act, but it鈥檚 not in my bank account yet and I have bills to pay. Can HFA鈥檚 Helping Hands program help? Signed, Need a Little Help From My Friends Dear […]
HFA has received several questions regarding whether the enhanced unemployment benefits that the federal government provides during the聽national coronavirus emergency could adversely impact people who have Medicaid coverage by virtue of the fact that they receive disability benefits under the Supplemental Security Income (SSI) program. SSI recipients are allowed to work in limited situations.聽 If […]
COVID-19 upended the lives of virtually everyone over the course of the last month 鈥 and it appears likely that nationwide disruptions to work, school, healthcare, and everyday life will continue for some time longer. Amidst this upheaval, HFA wants to reassure you that we will continue to serve and support you. We are working […]
On March 2, 2020, the U.S. Supreme Court announced that it will hear an appeal from the Fifth Circuit ruling in Texas v. United States, a case challenging the constitutionality of the Affordable Care Act. In earlier phases of that litigation, a federal district court and an appellate court had ruled that the ACA鈥檚 individual […]
Click Below to Translate Page to Spanish. Federal insurance rules proposed for 2021 Plan Year. Every year, the U.S. Department of Health and Human Services publishes a federal rule (the 鈥淣otice of Benefits and Payment Parameters,鈥 or NBPP) to govern operations of the ACA marketplaces and ACA health plans for the coming year. The 2021 […]
Takeda announced the recall of two lots of VONVENDI vonWillebrand factor (recombinant) 1,300 I.U. vials on February 25, 2020. HFA and NHF recognize that recalls can be very unsettling for many in the bleeding disorders community. We are in communications with Takeda to obtain additional detailed and timely information regarding the events that led up […]
Dear Addy, My child wants to attend our state’s Advocacy Day, but she has a limited number of excused absences. I want her to learn how to advocate for herself and the bleeding disorders community, as well as to see democracy in action. Can you offer guidance for working with her school to allow the […]
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