Donate

Advocacy News

State of the States: Winter 2022

March 15, 2022

Progress slows on state legislation to prohibit harmful copay accumulators After unprecedented success over the past two sessions, legislation to protect people who rely on copay assistance has struggled to gain traction in state legislatures so far this year. A dozen states (and Puerto Rico) already prohibit harmful 鈥渃opay accumulator adjusters鈥 鈥 an insurer strategy […]

2022 Summer Internships and Young Adult Advocacy Summit on Location in Washington, DC

January 21, 2022

Summer 2022 is gearing up to be an exciting time here at HFA for young adults and college students in our bleeding disorders community. We will be kicking off the summer in Washington, DC with a 10-week paid internship for two eligible college students and ending the summer with an exciting Young Adult Advocacy Summit […]

State of the States: Fall 2021

December 29, 2021

Prohibiting copay accumulators remains a state priority for 2022 Legislation to prohibit health plans from depriving consumers of any benefit from third-party assistance with cost-sharing obligations has already been pre-filed or drafted in at least a dozen state legislatures for the coming session (as well as the District of Columbia), with pending bills in four […]

HFA Recognizes 2021 Congressional Champions & Hosts Virtual Fly-In

November 17, 2021

Due to ongoing concerns regarding public gatherings and the impact of COVID-19 on in-person legislative visits, HFA is again holding its annual Patient Fly-In and Congressional Reception experience as an online campaign. The event is taking place from November 15-19, 2021. On November 16th, grassroots bleeding disorders advocates are participating in Congressional visits by video […]

State of the States: Summer 2021

October 28, 2021

In this quarter鈥檚 news: advocates notch another win, securing state level protection against copay accumulator adjusters; Missourians begin enrolling in the state鈥檚 expanded Medicaid program; and ACA marketplaces report 2021 enrollment totals, rates for 2022, and other developments. North Carolina becomes 12th state to ban copay accumulator adjusters Governor Roy Cooper signed S.B. 257 into […]

Intern Introspective: Final Update from our 2021 Class

August 13, 2021

The HFA team welcomed a new group of students to our summer 2021 internship program! They participated in our annual Advocacy internship virtually, developing their passion in health care policy and self-advocacy. They participated in regular webinars and online training about legislative, policy and advocacy issues, learning more about hearings and what it means to […]

Intern Introspective: Updates from our 2021 Class

August 6, 2021

The HFA team is excited to welcome a new group of students to our summer 2021 internship program! They will be participating in our annual Advocacy internship virtually, developing their passion in health care policy and self-advocacy. They will be participating in regular webinars and online training about legislative, policy and advocacy issues, learning more […]

2021 Virtual Young Adult Advocacy Summit

August 5, 2021

Every year, HFA holds an inspiring and fun Young Adult Advocacy Summit (YAAS)聽to introduce young adults to legislative and personal advocacy in a safe and supportive manner with hands-on training and peer support. Our outreach to legislative offices on Capitol Hill and federal agencies empowers participants to apply their knowledge and experience in their communities. […]

Intern Introspective: Updates from our 2021 Class

July 30, 2021

The HFA team is excited to welcome a new group of students to our summer 2021 internship program! They will be participating in our annual Advocacy internship virtually, developing their passion in health care policy and self-advocacy. They will be participating in regular webinars and online training about legislative, policy and advocacy issues, learning more […]

State of the States: Spring 2021

July 26, 2021

  Six new states enact prohibitions against copay accumulator adjusters Bills preventing health plans from pocketing the cost-sharing assistance provided by manufacturers or non-profits (and refusing to apply it to a consumer鈥檚 deductible or out-of-pocket maximum) were signed into law this session in six additional states. The victories in Arkansas (H.B. 1569), Connecticut (S.B. 1003), […]

Intern Introspective: Updates from our 2021 Intern Class

July 22, 2021

The HFA team is excited to welcome a new group of students to our summer 2021 internship program! They will be participating in our annual Advocacy internship virtually, developing their passion in health care policy and self-advocacy. They will be participating in regular webinars and online training about legislative, policy and advocacy issues, learning more […]

Intern Introspective: Updates from our 2021 Intern Class

July 16, 2021

The HFA team is excited to welcome a new group of students to our summer 2021 internship program! They will be participating in our annual Advocacy internship virtually, developing their passion in health care policy and self-advocacy. They will be participating in regular webinars and online training about legislative, policy and advocacy issues, learning more […]

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 […]

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 […]

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 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. […]

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 […]

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 […]

Intern Introspective: An Average Week

July 30, 2020

It鈥檚 hard to believe, but our summer interns are more than halfway through their time with us this summer. In this blog post Will and Tameelah give you an inside look into an average week in the life of an intern, and in Will鈥檚 words, 鈥渉opefully inspire some intrepid young person to apply for this […]

Joint Statement on Recall of Stimate

July 22, 2020

On July 21, CSL Behring and Ferring Pharmaceuticals announced the recall of multiple lots of Stimate (desmopressin)聽in the United States, as part of a global recall. This聽troubling聽announcement has raised many questions on the part of national and international patient organizations and community members. Today, HFA and NHF have聽submitted a letter聽to CSL Behring and Ferring requesting […]

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 […]

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 […]

HFA & NHF Release Preliminary Executive Summary of Safety Summit

April 30, 2020

The Hemophilia Federation of America (HFA) and National Hemophilia Foundation (NHF) 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 individuals affected by bleeding disorders, clinicians, patient […]

HFA & NHF Discuss Bayer Recall with FDA

October 7, 2019

The Hemophilia Federation of America and the National Hemophilia Foundation are pleased to share a brief update with the community concerning a recent meeting with the FDA as well as a number of additional resources that the FDA provided after the call.聽 HFA and NHF will continue to update the bleeding disorders community as any […]

Understanding FDA Drug Recall Procedures

August 19, 2019

It is important to pay attention when a product is recalled, but with all the different sources of information, and the different types of recalls, it can be confusing! The Food and Drug Administration follows several different recall procedures, outlined in the Regulatory Procedures Manual.[1] Recalls are used because they have the potential to be […]

Intern Introspective: Dylan’s Experience

August 10, 2019

Hemophilia Federation of America鈥檚 Policy and Government Relations Internship has come to a close for 2019. Last week, Jasmin shared her thoughts on the summer and this week we hear from Dylan. HFA is very grateful for all of the work Jasmin and Dylan have completed in 10 short weeks. We can鈥檛 wait to see […]

Intern Introspective: Jasmin’s Experience

August 2, 2019

Earlier this summer we welcomed our summer policy and governmental relations interns to our D.C. office. Jasmin and Dylan 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, Jasmin and Dylan […]


Sign up for E-mails, Dateline Magazine, and other ways to stay connected.