Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
HFA learned late Friday night that a federal court has struck down the entire Affordable Care Act as unconstitutional. You can find an explanation of the lawsuit (Texas v. United States) here and can read a description of the latest ruling here. HFA is studying the ruling and will post a more detailed update soon. In […]
Dear Addy, I’ve heard about HFA’s new Learning Central, but I’m not sure how to find it and the benefits of using it. Can you provide more information? Signed, Lifelong Learner Dear Learner, HFA’s Learning Central is part of the HFA Institute, a new e-learning initiative designed for the bleeding disorders community. The HFA Institute […]
Featured stories: Healthcare was a driving issue for many voters in the 2018 mid-term elections. The results of the 2018 election are in and we now know that the 116th Congress will be a divided Congress – a Republican Senate and a Democratic House. Will the new Congress do anything to impact access to meaningful healthcare? […]
Dear Addy, My district elected a new member of Congress in the mid-term election and I’d like to start building a relationship with them. How can I connect with my legislator as they prepare to take office? Signed, Proactive Advocate Dear Proactive, It’s never too early to start building a relationship with your new legislator. […]
Dear Addy, I’d like to be more involved in my local organization’s advocacy work in the new year, but I have a hard time coming up with the right words to get my point across. Does HFA have any resources for storytelling for advocacy? Signed, In Need of Instruction Dear Instruction, You came to the […]
Featured stories: New HHS policy could diminish protections for people who depend on quality, affordable health insurance. On Oct. 22, the U.S. Department of Health and Human Services released new guidance spelling out how states can win approval to waive various Affordable Care Act requirements. This arcane new policy could seriously impact protections for patients […]
Dear Addy, I know that the Open Enrollment Period for health insurance is right around the corner. As a person with a bleeding disorder, what should I look for in an insurance plan? Signed, Savvy Subscriber Dear Subscriber, The Open Enrollment Period is a time frame each year when health insurance plans or HMOs (health maintenance organizations) are […]
Dear Addy, I recently enrolled in Medicare and I got a notice that open enrollment for 2019 is coming up. What do I need to know about choosing my plan for the coming year? Signed, Medicare Madness Dear Medicare Madness, You are right: Medicare open enrollment for 2019 is fast approaching! The open enrollment period […]
As we’ve previously reported, several lawsuits are currently pending in federal courts concerning aspects of the Affordable Care Act. One lawsuit questions whether the ACA is still valid, despite the elimination of the individual mandate penalty; other cases take an opposite tack, challenging recent Administration actions and rulemakings as inconsistent with the ACA. Today, HFA […]
Dear Addy, I watched a few of HFA’s PRIDE Project webinars. Can you explain to me how engaging in research will make me a better advocate? Signed, Curious about Research Dear Curious, It’s great to hear that you watched some of the PRIDE Project webinars, as those webinars provide an introduction to and basic training […]
Featured Stories: As November draws near, #DefendPreEx remains in the spotlight. We have written before about Texas v. United States, a lawsuit that seeks to overturn the Affordable Care Act’s protections for patients with pre-existing conditions. In September, the federal court with jurisdiction over the case held a hearing to consider the parties’ arguments. At issue […]
Dear Addy, With the midterm election fast approaching, does HFA have any tools to assist voters? I’d like to see who the candidates are in my district and state and where they stand on access to healthcare for the bleeding disorders community. Signed, Informed Voter Dear Voter, This is a great and timely question with […]
Dear Addy, My local organization is hosting a few events this fall and I’d like to invite our U.S. Representative to attend. How do I send them an invitation? Signed, Active Constituent Dear Constituent, This is a timely question, as mid-term elections are a few months away and members of the House of Representatives and […]
Featured Stories: HFA, along with other patient groups, continues to argue against restrictive Medicaid eligibility policies. HFA has written before about a new federal policy that allows states to cut off Medicaid coverage for adults who don’t meet state work requirements. The US Centers for Medicare and Medicaid Services has so far approved work requirements […]
The Trump Administration issued a final rule on June 19, 2018 expanding association health plans. The rule’s stated aim is to “help Americans struggling to afford health coverage find new, more affordable options.” You can read more about the rule here. HFA and many other patient advocacy groups think the final rule takes the wrong tack. Association […]
Dear Addy, I recently attended an event and learned about submitting issues with my insurance to HFA’s Project CALLS. However, I still have some questions about how CALLS works and what happens when I submit an issue. Can you explain the process? Signed, CALLS Quandary Dear Quandary, HFA created an infographic to answer this very […]
Earlier this summer we welcomed our summer policy and governmental relations interns to our D.C. office. Alexandra and Catherine are part of the bleeding disorders community and were chosen to participate in a 10-week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, Alexandra and Catherine: […]
Dear Addy, I’ve heard friends in the bleeding disorders community speak about depression and other mental health concerns. I want to support them, but I’m not sure how to approach this sensitive topic. Can you offer guidance on how to have a conversation with friends about mental health? Signed, Caring Friend Dear Friend, Thank you […]
New federal rules, released Aug. 1, roll back limits on short-term health plans. Short-term plans are primarily designed to bridge gaps in coverage that can occur, e.g., when an individual is transitioning between jobs. As such, these plans don’t have to meet Affordable Care Act standards. They can deny coverage and/or can charge higher premiums […]
Hemophilia Federation of America will recognize 25 years serving the bleeding disorders community in 2019 with plans to display historical records at its annual symposium in San Diego. The Washington, D.C.-based organization is currently collecting archival-type material, such as vintage medical equipment, supplies, rally posters, journals, diaries, newsletters, documents, photographs and other items representing the […]
Last week, Alexandra and Catherine had the opportunity to tour Grifols’ plasma collection center in Frederick, Md. Centers like this collect plasma from donors and returns the red blood cells to the donor. The plasma that is collected then undergoes several levels of strict testing and is pooled and parted out to create many different […]
Dear Addy, I have a bleeding disorder and two siblings who are unaffected. My siblings often ask how they can help or what they can do to support me. How do I share with them what I’m feeling and how to best support me? I don’t want to burden them with my issues. Signed, Supportive […]
Many in our community have questions about a recent Slate magazine article that reported that the U.S. Department of Health and Human Services is reallocating money from the Ryan White HIV/AIDS Program to help defray costs of the U.S. Office of Refugee Resettlement as a result of current immigration policy. The Ryan White Program, named for […]
Dear Addy, I’d like to meet with my legislators at home during Congress’s August recess. How do I schedule a meeting? Signed, Recess Rockstar Dear Recess, August recess is a great time to meet with your federal legislators at home. Members of the House of Representatives will be on recess from July 27 through Sept. […]
The halfway point of our Policy and Government Relations Internship program is an excellent time for Alexandra and Catherine to reflect on the first five weeks of their internship. In this blog post, Alexandra and Catherine break down what an average week looks like for them as HFA interns and they talk about what the […]
Dear Addy, I’ve seen HFA post information on accumulator adjuster programs, but I’m still a little unclear about what this means and how I could be affected. Does HFA have any other resources on accumulator adjuster programs? Signed, Deductible Detective Dear Detective, This is a great question, as accumulator adjuster programs (AAPs) are increasingly common in the […]
We’ve introduced you to Alexandra and Catherine, our summer Policy interns. They have been busy in D.C., attending Congressional hearings and learning the ropes of working for a national organization. During their second week, they experienced first-hand the planning and execution of our fifth annual Patient Fly-In. Read their experiences through their eyes on how […]
On June 12,2018, we hosted our 5th Annual Patient Fly-In in Washington, DC alongside an online Virtual Hill Day. . With that in mind, patient representatives asked Senators and Representatives to protect affordable coverage for people with pre-existing conditions, ensure that insurance plans provide meaningful coverage and an appropriate scope of health benefits; protect people against potentially […]
Dear Addy, I saw a post on HFA’s Facebook page about a Virtual Hill Day on June 12. Can you tell me more about this and how people outside of D.C. can be involved? Signed, Virtual Visitor Dear Visitor, Every year, HFA hosts a fly-in for members of the bleeding disorders community to come to […]
Earlier this year, we opened applications for a ten-week policy and government relations internship* for this summer. We are excited to introduce you to the two candidates that we selected! Alexandra Abreu Boria and Catherine Anderson, who are part of the bleeding disorders community and have been chosen because of their leadership qualities and interest in […]
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