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Advocacy News

HFA and NHF Following Developments in Ryan White HIV/AIDS Program in Response to Magazine Article

July 20, 2018

  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: August Recess

July 9, 2018

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. […]

Intern Introspective: The First Five Weeks

July 5, 2018

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: Accumulator Adjuster Programs

June 25, 2018

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 […]

Intern Introspective: Experience on Capitol Hill

June 22, 2018

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 […]

HFA RECOGNIZES CONGRESSIONAL REPRESENTATIVES AS 2018 CHAMPIONS

June 12, 2018

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: Virtual Hill Day

June 11, 2018

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 […]

Intern Introspective: Meet Alexandra and Catherine

June 8, 2018

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 […]

Dear Addy: Planning for Summer Activities

May 28, 2018

Dear Addy, This summer, my family has plans to travel and attend camp, in addition to numerous other activities and commitments. Can you recommend resources to help manage my kids’ bleeding disorder while we’re on the go? Sincerely, Summer Savvy Dear Summer, With Memorial Day marking the unofficial start of summer, this is a timely […]

Dear Addy: New Treatment Research

May 15, 2018

Dear Addy, How do I approach my doctor with questions on new research about a treatment for my bleeding disorder? There are so many novel treatments under development or newly available! I want to make sure that my doctor considers my input and will work with me to select the treatment that best serves my […]

Dear Addy: Becoming Involved With Committees

May 1, 2018

Dear Addy, I recently participated in a state legislative day and there was a lot of discussion about committees. It’s been years since I took a civics class and I don’t remember much about committees. Could you explain what they are and why they’re important to our advocacy efforts? Signed, Curious About Committees Dear Curious, […]

Dear Addy: Symposium

April 16, 2018

Dear Addy, I’m attending HFA’s Symposium next week and I’d like to gather information about personal and legislative advocacy to bring back to my community. What sessions do you recommend I attend? Signed, Planning Ahead Dear Planner, It’s great to hear you will be attending Symposium in Cleveland! This year, we have expanded our advocacy […]

Dear Addy: Building Relationships

April 2, 2018

Dear Addy, How can I maintain relationships with my legislators after participating in an advocacy day? Signed, Building for the Future Dear Builder, It’s great to hear you are thinking ahead to what’s next! Building relationships with your legislators is an important advocacy strategy and there’s a lot you can do from home and throughout […]

Dear Addy: Op-ed

March 22, 2018

Dear Addy, I’ve heard writing an op-ed for my local newspaper is a good way to spread awareness about bleeding disorders. I’d like to submit a piece during Bleeding Disorders Awareness Month. Can you offer tips for submitting my story? Signed, Ready-to-Write Dear Writer, Writing an op-ed or opinion piece is a great way to […]

Dear Addy: Bleeding Disorders Awareness Month

March 5, 2018

Dear Addy, I’ve seen HFA’s Facebook posts about Bleeding Disorders Awareness Month. Can you tell me more about it and how I can get involved? Signed, Attentive Advocate Dear Attentive, For more than 30 years, the bleeding disorders community celebrated March as the unofficial Hemophilia Awareness Month. In 2016, this designation become official when the […]

Dear Addy: Bullied for Bruising

February 20, 2018

  Dear Addy, My eleven-year-old son recently shared that he’s being bullied at school because of bruising caused by his bleeding disorder. How can I help him educate his classmates about hemophilia and prevent future bullying? As much as I want to protect my son, I also know that I need to empower him to […]

Dear Addy: Legislative Day Toolkit

February 5, 2018

Dear Addy, I’m participating in an Advocacy Day with my local bleeding disorders organization this month. I have limited experience with legislative advocacy and it’s been a long time since I took a civics class! Could you share insight on what to expect and how to prepare? Signed, Proactive Participant Dear Participant, This is a […]

Dear Addy: Project CALLS 2018

January 19, 2018

Dear Addy, I’m already experiencing problems with my insurance in the new year. Where can I go to report these issues? Signed, New Year, Old Issues Dear New Year, You are not alone. HFA regularly hears from community members with concerns about access to care due to limitations or mandates set by their insurance company. […]

HFA and NHF Issue Joint Statement Regarding Shire Lawsuit Against Genentech/Roche

January 12, 2018

In the past few weeks, we have received many inquiries regarding the scope of the injunction Shire is seeking in its lawsuit against Genentech/Roche.  Certain information has become public during this period that enables NHF and HFA to provide some limited guidance as to the scope of the injunction that Shire has requested from the […]

Dear Addy: Accumulator Adjuster Programs

January 8, 2018

Dear Addy, I get assistance with my out-of-pocket costs from the manufacturer of my clotting factor product. My insurer just notified me that it will no longer apply that assistance to my deductible and out-of-pocket maximums! Can they do that? Signed, Distressed Over Deductibles Dear Deductibles, You are running up against a new strategy that […]

Dear Addy: Public Speaking

December 25, 2017

Dear Addy, I want to participate in a legislative day, but I’m a terrible public speaker. Help! Signed, Nervous Nelly Dear Nervous, You are not alone – many people worry about public speaking! Use these tips to help you become more confident and comfortable speaking during legislative meetings. Hopefully you’ll find this advice beneficial – […]

Dear Addy: Take Action

December 13, 2017

Dear Addy, What is the best way for me to contact my legislators when policy issues affecting the bleeding disorders community arise? Signed, Alert Advocate Dear Advocate, HFA’s Take Action Center has all you need to contact your legislators, including talking points on issues affecting the bleeding disorders community. Watch this short video on using the […]

Dear Addy: New Parent

November 27, 2017

Dear Addy, I’m a new mom and my husband and I just learned that our baby has hemophilia A. We are overjoyed at becoming parents and overwhelmed with next steps. Could you offer tips for building a relationship with a hematologist?  Signed, New Mom  Dear Mom, You’ve come to the right place! Knowing where to […]

Dear Addy: ABLE Accounts

November 13, 2017

Dear Addy, Are there ways for my teenage son to save money for college, without endangering his health coverage? My son is currently enrolled in Medicaid under our state’s Katie Beckett program for children with long-term disabilities. Signed, Savvy Saver Dear Saver, Here’s one option you and your son may wish to explore: opening an […]

Dear Addy: 2018 Open Enrollment

October 30, 2017

Dear Addy, I’m applying for health insurance for the first time this open enrollment period. With a bleeding disorder, what should I look for in an insurance plan? Signed, First-time Subscriber Dear Subscriber, The Open Enrollment Period is a timeframe each year when health insurance plans or HMOs (health maintenance organizations) are required by law to accept applications […]

Bleeding Disorders Organizations Introduces Joint Statement Supporting Bi-partisan Alexander-Murray Legislation

October 25, 2017

Click here for the combined issue statement from the Coalition for Hemophilia B, the Hemophilia Federation of America, the National Hemophilia Foundation and the Hemophilia Alliance supporting bi-partisan Alexander-Murray Legislation. (Full text available in pdf and below) People with Hemophilia and Other Bleeding Disorders Urge their Senators to Support Alexander-Murray Market Stabilization Legislation Senators Lamar Alexander […]

Dear Addy: Health Insurance for Young Adults

October 15, 2017

Dear Addy, My son with hemophilia is about to turn 26 and will need to find his own insurance plan. As a parent, how can I help him navigate this process? Signed, Always-an-Advocate  Dear Advocate, This is an important but complicated task. HFA created the following infographic as a tool for walking through the different […]

ACTION ALERT: Graham-Cassidy-Heller-Johnson bill

September 19, 2017

Your access to healthcare is at risk. The Senate is currently considering another bill to repeal the Affordable Care Act (ACA), sponsored by Sens. Cassidy and Graham. Congress only has until September 30th to act on this measure. We must work together to defeat this bill. Why should you take action? The Graham-Cassidy legislation would harm […]

Dear Addy: Teaching Independence

September 19, 2017

Dear Addy, I have two preteen kids with bleeding disorders and I want to instill in them independence with respect to their care. Do you have any advice on ways to build this into our routine? Signed, Introducing Independence Dear Independence, This is a great question to be asking now, as transitioning to independence is […]

Dear Addy: Sports

September 4, 2017

Dear Addy, My son has hemophilia and loves to play sports. He is going into 6th grade this fall and wants to join the soccer team. How do I set realistic expectations with him and his coach? Signed, Soccer Mom Dear Mom, You are not alone in your concerns – this is a common question […]


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