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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 鈥 this is a common question […]

Dear Addy: Step Therapy 2

August 21, 2017

Dear Addy, My insurance company is trying to make me go through step therapy to get access to the treatment product I need! Are they practicing medicine without a license and is it illegal? Sincerely, Feeling Pressured Dear Pressured, There is no clear legal answer to your question: is an insurer 鈥減racticing medicine without a […]

Infusing Love: Knowing How and When to Advocate

August 17, 2017

This past May our family was invited to attend the HFA Patient Fly-In to Washington, DC. The patients and caregivers were briefed on the talking points the evening before our scheduled meetings with our Senators and Representatives. As you know, health care is a hot topic and there were many talking points that needed to […]

Leading Bleeding Disorders Advocacy Organizations File Hemophilia Discrimination Complaint Against Wellmark Blue Cross and Blue Shield

August 15, 2017

– Complaint argues Wellmark’s withdrawal from the Iowa marketplace discriminates against protected health conditions under the ACA, including hemophilia, and its disclosure of a patient’s personal health information violates HIPAA WASHINGTON, Aug. 15, 2017 /PRNewswire-USNewswire/ —聽The National Hemophilia Foundation (NHF), Hemophilia Federation of America (HFA), and Hemophilia of Iowa (HOI) filed a complaint today with […]

Dear Addy: Project CALLS 2

August 8, 2017

Dear Addy, I鈥檓 having trouble with my health insurance, which is making it difficult to manage my bleeding disorder. What can I do to make my concerns heard? Signed, Help Wanted Dear Help, Thank you for reaching out to HFA about the trouble you鈥檙e having with your health insurance. You are not alone in your […]

Intern Introspective: That鈥檚 a Wrap for La鈥橞rittinee and Paul

July 28, 2017

Earlier this summer we welcomed our summer policy and government relations interns to our D.C. office. La鈥橞rittinee and Paul 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, La鈥橞rittinee and Paul: […]

ACTION ALERT: Vote Likely on Tuesday, July 25!

July 24, 2017

On Tuesday, the Senate will likely vote on a 鈥淢otion to Proceed,鈥 which is the first step to open debate on health reform legislation.聽 If the motion passes, they may consider a 2015 bill that will repeal parts of the Affordable Care Act without replacing it, or the Better Care Reconciliation Act (BCRA), the recent […]

Dear Addy: PRIDE Project

July 24, 2017

Dear Addy, I have heard of HFA鈥檚 PRIDE Project but am not clear on how I can participate and what I can learn from my participation. As a bleeding disorders community member, what do I need to know about the project and can I really do research? Signed, Researching Research Dear Researcher, You do research […]

Update 2: Bioverativ Files Complaints Against CSL Behring’s Idelvion

July 19, 2017

As noted in our July 10, 2017 story, Bioverativ has filed complaints in the U.S. District Court for the District of Delaware and with the U.S. International Trade Commission alleging that Idelvion, a novel factor IX albumin fusion protein developed by CSL Behring, infringes upon three Bioverativ patents. HFA, in collaboration with the National Hemophilia […]

ACTION ALERT: July 17, 2017 Update on BCRA

July 17, 2017

A vote on the health care bill will happen soon, and our organizations need you to take action. On July 13, 2017, the Senate released another 鈥渄iscussion draft鈥 of the BCRA. Despite promises from numerous lawmakers to change the bill, the latest iteration of the bill actually decreases protections for those with pre-existing conditions. The […]

Dear Addy: Hematology Visit

July 10, 2017

Dear Addy, I often become flustered when I visit my hematologist, despite having lots of questions. Can you offer guidance on how to prepare for my visit so I get my questions answered? Signed, Stressed by Appointment Dear Stressed, Any doctor visit can generate a case of nerves. If you have butterflies in your stomach […]

Intern Introspective: A Week in the Life

June 30, 2017

The halfway point of our Policy and Government Relations Internship program is an excellent time for the interns to reflect on the first five weeks of their internship. La鈥橞rittinee and Paul break down what an average week looks like for them as an HFA intern. Paul: After our first action packed week of the internship […]

Bleeding Disorders Organizations Urge Senators to Vote No on Better Care Reconciliation Act

June 29, 2017

  For the past few days, our organizations have been encouraging you to call, tweet and email your Senators to vote No on the Better Care Reconciliation Act (BCRA). 聽On June 27th, Senate Majority Leader Mitch McConnell delayed the Senate vote on the bill but the vote could occur quickly if Leader McConnell is able […]

Dear Addy: Coverage for New Therapies

June 26, 2017

Dear Addy, I want to switch to a new hemophilia therapy and, though my doctor has prescribed the product, my insurer won’t authorize coverage. How can I get this covered? Signed, Concerned Consumer Dear Consumer, When new therapies come on the market, there is often a lag before health plans add those products to their […]

ACTION ALERT: Ask Your Senators to Vote NO on BCRA!

June 26, 2017

On Thursday, June 22, 2017, the Senate leadership released a 鈥渄iscussion draft鈥 of its version of legislation to repeal the Affordable Care Act (ACA). Despite promises from numerous lawmakers, the Senate bill in fact builds off the much criticized, House-passed American Health Care Act (AHCA). The Senate discussion draft would, among other things: Undermine聽protections for […]

Intern Introspective: Fly In Recap

June 16, 2017

Earlier this summer, we introduced you to La鈥橞rittinee and Paul, our summer Policy interns. They have been busy all over DC, attending Congressional hearings and learning the ropes of working for a national organization. During their first week, they got to experience first-hand the planning and execution of our 4th Annual Patient Fly-In. Below are […]

Dear Addy: History

June 12, 2017

Dear Addy, My daughter has informed me that most people in her generation don’t know anything about AIDS, Hemophilia, or Ryan White. I find this pretty upsetting. How can we educate the next generation about the history of the bleeding disorders community? Sincerely, Old Enough to Remember Dear Remembrance, This is a great question and […]

Dear Addy: Virtual Hill Day

May 30, 2017

Dear Addy, I saw a lot of activity on social media last week about HFA鈥檚 Virtual Hill Day and Patient Fly-in. Can I still participate? Signed, Always an Advocate Dear Advocate, YES! On May 24th, HFA organized a Virtual Hill Day, in conjunction with meetings on Capitol Hill, to encourage community members nationwide to contact […]

HFA Honors Congressional Representatives as Champions for Chronic Illness

May 24, 2017

On May 24, 2017, we hosted our 4th Annual Patient Fly-In in Washington, DC聽alongside an online聽Virtual Hill Day. As they consider HR 1628, the American Health Care Act (AHCA), the Senate has indicated that they intend to start from scratch on health reform and they need to hear from their constituents when crafting their plan. […]

Bleeding Disorders Advocates Host Patient Fly-In

May 23, 2017

  Washington, DC鈥 Tomorrow, Hemophilia Federation of America (HFA) is hosting a Patient Fly-In and Virtual Hill Day for the bleeding disorders community. As questions surrounding health reform move to the Senate, patients will meet with their Senators, ensuring that their needs are represented. Patients will also participate in a Virtual Hill Day by calling, […]

Dear Addy: Life Insurance

May 15, 2017

Dear Addy, I’m applying for life insurance, but I’m either ineligible or being told I have to pay three times the normal rate because I have hemophilia. Is this typical with a rare disorder, and is there anything I can do about it? Signed, Planning Ahead Dear Planning, Unfortunately, as you鈥檝e found, your health status […]

Dear Addy: Symposium

May 1, 2017

Dear Addy, I attended Symposium in April and gained a lot from the advocacy sessions. I want to incorporate what I learned at Symposium into my regular routine. What recommendations do you have for making advocacy an everyday activity? Signed, Maintaining the Momentum Dear Momentum, Thanks for attending HFA鈥檚 Symposium last month in Providence. It鈥檚 […]

Dear Addy: HFA Community Research Portal

April 18, 2017

Dear Addy, What is the HFA Community Research Portal and why is it important to me? Sincerely, Research Meets Advocacy Dear Research, The HFA Community Research Portal is an exciting new research project that will provide individuals with bleeding disorders the chance to directly engage in meaningful research projects. The HFA Community Research Portal is […]

Dear Addy: Share Your Story

April 2, 2017

Dear Addy, I’ve been following the news about the Affordable Care Act. What else can the bleeding disorders community do to ensure access to quality health care? Signed, Energized Advocate Dear Energized, Advocacy is most successful when people share their personal story about how legislation affects them. Across political parties, Americans are reaching out to […]

Patients’ Genetic Privacy Threatened by H.R. 1313

March 21, 2017

Congress is currently considering legislation that would undermine patient privacy and workplace non-discrimination protections for individuals and families affected by genetic conditions. This legislation, the Preserving Employee Wellness Programs Act (H.R.1313) was approved by a House committee earlier this month. Under existing law, an employer can run a 鈥渧oluntary鈥 workplace wellness program 鈥 and can […]

Dear Addy: Advocacy Committee

March 6, 2017

Dear Addy, I really want to help my local organization grow its advocacy efforts by starting a committee. However, I’m overwhelmed by the process. Where should I start, and how do I maintain an advocacy committee? Signed, Committee Quandary Dear Quandary, Creating or joining an advocacy committee is a great role if you are interested […]

Dear Addy: Social Media

February 20, 2017

Dear Addy, I often hear about using social media to engage policymakers and spread awareness to friends. Does this really work? How can I advocate on social media without being annoying or preachy? Signed, Social Media Maven Dear Maven, Social media can be an excellent platform to raise awareness for an issue or cause you […]

Dear Addy: Out-of-Pocket Expenses

February 6, 2017

  Dear Addy, I just got my daughter’s January EOB, and I realized that my family is now responsible for up to $14,300 in out-of-pocket (OOP) expenses. Why did this amount go up $600, even though we kept our same insurance? And how can I afford this?!? HELP! Signed, Anxious about OOPs Dear Anxious, High […]

Millennials Get Busy- Advocacy for Young Adults

January 26, 2017

By Sarah Shinkman Learning how to advocate is an important life skill at any age. Whether you are practicing personal, peer, or group advocacy, you have the power to influence decisions that may affect you and others. HFA鈥檚 final Young Adult Hangout of 2016 featured two community advocates and a health insurance overview by Erin […]


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