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Advocacy News

COVID-19 Resources and Updates

April 8, 2021

Updates During this time of rapidly-changing news surrounding the COVID-19, HFA聽will publish information and resources about to assist our bleeding disorders community. Vaccinations HFA Financial Assistance Other Resources Fraud Alerts Medical, Industry and Product News  

Washington Wire: March 2021

March 31, 2021

COVID relief legislation makes health coverage more accessible and affordable On March 11, 2021, President Biden signed the $1.9 trillion American Rescue Plan Act into law. This sweeping measure provides economic relief to individuals, families, businesses, schools, and state and local governments. The law offers new incentives for holdout states to expand their Medicaid programs […]

REVIEW YOUR HEALTH COVERAGE: Recent Federal Law Lowers Costs, Opens Up New Options

March 31, 2021

The American Rescue Plan (ARP), signed into law on March 11, 2021, provides new opportunities to get health insurance coverage, and/or to reduce the cost of your premiums. Review your coverage now to make sure you are maximizing your benefits under the new law! WHO SHOULD REVIEW THEIR COVERAGE? Anyone who is currently uninsured or […]

HFA Joins 29 Other Patient Groups Urging Lawmakers to Limit the Spread of Substandard, Non-ACA-Compliant Health Plans

March 26, 2021

Thirty patient groups, representing millions of Americans who live with pre-existing conditions, published a new report that describes the risks patients face when they enroll in non-compliant, substandard health insurance products. The report calls on federal and state lawmakers to take immediate action to limit the proliferation of these inadequate health plans. The report, Under-Covered: […]

State of States: Spring 2021

March 19, 2021

All ACA Marketplaces Create New Special Enrollment Periods Due to COVID-19 All 15 of the state-based Marketplaces (SBMs) created pursuant to the Affordable Care Act have established a COVID-19 Special Enrollment Period for 2021 following the Biden Administration鈥檚 decision to reopen the federally-facilitated Marketplace (FFM) from Feb. 15 through May 15. SBMs can create their […]

Washington Wire: February 2021

February 26, 2021

Responding to the ongoing pandemic, the federal government has opened a special enrollment period (SEP) in the Healthcare.gov insurance marketplaces. This enrollment opportunity will run from Feb. 15聽to May 15聽in the 36 states that use the Healthcare.gov enrollment platform (most of the remaining states have already announced that they, too, will open a new 2021 […]

HFA and 14 Other Patient, Disability and Health Care Organizations Urge U.S. Supreme Court to Protect Access to Medicaid and Rule Against Work and Community Engagement Requirements

February 25, 2021

Lower Courts Have Ruled Work Requirements Would Reduce, Rather than Expand, Access to Health Care Fifteen groups representing patients, people with disabilities and health care professionals filed an amicus curiae – or friend of the court 鈥 brief today urging the U.S. Supreme Court to protect access to health coverage as it considers the validity […]

Washington Wire: January 2021

January 29, 2021

The 2021 federal health policy outlook started to come into sharper focus in early January, when runoff elections for both of Georgia鈥檚 Senate seats were decided. The election of Democratic Sens. Warnock and Ossoff means that the U.S. Senate is split 50-50 between the parties, with the Democrats holding the slimmest of majorities (Vice President […]

STATE OF THE STATES: Fall 2020

January 11, 2021

State Election Results Republican dominance in state elections could hinder new Democratic health initiatives Going into the 2020聽election, Democrats expected a 鈥渂lue wave鈥 at the state level that would build upon substantial gains in 2018, when they won back most of the record number of legislative seats they had lost since 2010.聽 Democrats had high […]

HFA Statement of Unity

January 8, 2021

Hemophilia Federation of America is appalled by the recent violence at the United States Capitol. Each time our community has visited the Capitol to advocate on behalf of bleeding disorders, it has been an honor and a privilege to be a part of the democratic process set forth in the Constitution. However, the events showed […]

Washington Wire: December 2020

January 5, 2021

As we enter the new year, there are good reasons to hope the U.S. may soon round the corner on COVID-19. In the meantime, though, we all still need to follow the guidelines of our public health authorities: stay home if sick, practice social distancing, avoid indoor settings, wear masks, and wash our hands. Please […]

Dear Addy: 2020 Election

December 21, 2020

Dear Addy, I鈥檓 seeing a lot about the 2020 Election results and it is all very confusing. Does HFA have a comprehensive resource that I can use to better understand the outcomes of this year鈥檚 election. Signed, Dear Constituent, Due to COVID-19, in some states the manner in which people voted may have changed to […]

Word From Washington: Patient Groups Urge U.S. District Court to Prevent Discrimination Against LGBTQ and Limited English Proficiency Patients

December 9, 2020

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 […]

Washington Wire: November 2020

November 30, 2020

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 […]

Dear Addy: ACA for 2021

November 23, 2020

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, […]

HFA Recognizes 2020 Congressional Champions; Hosts Virtual Fly-In

November 18, 2020

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. […]

Patient Groups Urge U.S. Supreme Court to Prioritize Patients and Uphold Health Care Law

November 9, 2020

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 […]

Okay, So What Can We Do?

November 3, 2020

“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 […]

With Patient Perspectives in Mind, ICER Evaluates Hemophilia Therapies

October 30, 2020

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 […]

Washington Wire: October 2020

October 30, 2020

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. […]

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 […]


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