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Dear Addy: Ready to Vote

October 21, 2020

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: Eager Learner

October 1, 2020

  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 […]

Washington Wire: September 2020

September 30, 2020

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 […]

STATE OF THE STATES: Summer 2020

September 22, 2020

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 […]

Intern Introspective: Tameelah’s Podcast

September 18, 2020

  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 […]

Intern Introspective: Will’s Reflections

September 7, 2020

  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 […]

Washington Wire: August 2020

August 31, 2020

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: Frantic Freshman

August 18, 2020

    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 […]

Stimate Recall – CSL Behring & Ferring Pharmaceuticals Response to HFA-NHF Letter

August 7, 2020

  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 […]

Washington Wire: July 2020

July 31, 2020

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: Family Planner

July 21, 2020

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, […]

Intern Introspective: Making Our Mark

July 6, 2020

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 […]

Washington Wire: June 2020

June 30, 2020

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 […]

Intern Introspective: Meet Our 2020 Policy & Government Relations Interns

June 19, 2020

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 […]

Dear Addy: Avid Advocate

June 16, 2020

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 […]

Washington Wire: May 2020

May 28, 2020

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: Cautious to Proceed

May 20, 2020

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 […]

Washington Wire: April 2020

April 30, 2020

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 […]

HFA & NHF Release Preliminary Executive Summary of Safety Summit

April 30, 2020

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 […]

Dear Addy: Seeking Assistance

April 20, 2020

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 […]

Washington Wire: March 2020

March 31, 2020

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 […]

Patient Groups Applaud Supreme Court鈥檚 Decision to Take Up Health Care Case

March 2, 2020

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 […]

Washington Wire: February 2020

February 28, 2020

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 […]

JOINT STATEMENT ON RECALL OF VONVENDI LOTS

February 27, 2020

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: Excused School Absence

February 18, 2020

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 […]

Washington Wire: January 2020

January 31, 2020

Click Below to Translate Page to Spanish. HFA and NHF co-hosted a Safety Summit in Washington, D.C., over three days at the end of January. The summit was convened in recognition and response to community concerns arising from a series of drug safety reports in 2019. Those safety incidents rocked the hemophilia community 鈥 and […]

Dear Addy: Reporting Insurance Issues

January 21, 2020

Dear Addy, I鈥檓 already experiencing issues with my health insurance, despite being less than a month into the new year. What resources does HFA have for reporting these issues? Signed, Frustrated Consumer Dear Frustrated, HFA understands your frustration and wants to hear from you. We strongly encourage you to reach out to HFA with stories […]

Word From Washington: Patient Groups Urge Supreme Court to Swiftly Take Up Health Care Case

January 16, 2020

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 […]

Word From Washington: 聽24 Patient Groups Endorse Expedited Supreme Court Review of Affordable Care Act Case聽

January 3, 2020

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 Wire: December 2019

December 29, 2019

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 […]


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