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News & Perspectives

Dear Addy: Framing Your Story

November 13, 2018

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 […]

Genentech to Present New Data at the American Society of Hematology 2018 Annual Meeting

November 7, 2018

  The following is an excerpt from a press release from Genentech. Read the press release in its entirety here. Genentech has announced new data that will be presented at this year’s annual American Society of Hematology meeting held in San Diego from Dec. 1-4. Ten Genentech medicines will be featured in more than 70 abstracts, including […]

Washington Wire: October 2018

October 30, 2018

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: 2019 Open Enrollment Period

October 29, 2018

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 […]

Infusing Love: There’s No Quitting

October 26, 2018

About a year or so ago, I thought it would be a great idea for HFA to apply to be a Charity Partner for the Marine Corp Marathon in Washington, D.C.  When we were selected, I was beyond excited.  Running a marathon was on my bucket list.  I know, really cliché, but true.  It was […]

Mental Health Awareness Campaign: How to Get Started

October 18, 2018

  You have decided to take the first step toward mental health care, but how do you get started? Luckily you have options and many people around who are eager to help. Most times, the initial step of reaching out are with the individuals and groups that you most trust, such as family, friends, physician, […]

Dear Addy: Medicare Open Enrollment

October 15, 2018

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 […]

Word from Washington: HFA Joins Amicus Brief in Legal Challenge to Short-Term Health Insurance Rule

October 8, 2018

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 […]

FDA Approves Genentech’s Hemlibra

October 4, 2018

The following is an excerpt from a press release from Genentech. Read the entire press release here. Genentech, a member of the Roche Group, announced that the U.S. Food and Drug Administration has approved Hemlibra®(emicizumab-kxwh) for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adults and children, ages newborn and older, […]

LA FDA APRUEBA HEMLIBRA DE GENENTECH

October 4, 2018

El siguiente es un comunicado de prensa proporcionado por Genentech.  LA FDA APRUEBA HEMLIBRA® DE GENENTECH (EMICIZUMAB-KXWH) PARA LA HEMOFILIA A SIN INHIBIDORES DE FACTOR VIII – El primer medicamento que reduce considerablemente la hemorragia tratada en comparación con la previa profilaxis de factor VIII basada en una comparación intrapaciente – – Único medicamento que puede […]

Dear Addy: Engaging in Research

October 1, 2018

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 […]

Washington Wire: September 2018

September 28, 2018

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 […]

Infusing Love: A Busy First Week of School

September 26, 2018

My boys went back to school this past week, and while I’m not exactly a pro, I have done this before. My youngest, Myles started first grade while my oldest, Zachary, began fifth grade. The first week of school is exhausting, overwhelming, and frustrating. It won’t be a picnic for a child with a bleeding disorder and a […]

Dear Addy: Voter Information

September 17, 2018

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 […]

!Mes nacional de la Herencia Hispana! 2018

September 13, 2018

!Mes Nacional de la Herencia Hispana! Publicación de la semana cuatro Alguna vez se ha preguntado como sabe su doctor que el medicamento que le está recentando es efectivo y adecuado para tratar su condición… A través de la investigación se informan decisiones sobre medicamentos, así como otras preguntas sobre la eficacia, seguridad e idoneidad de […]

Infusing Love: Daycare to Preschool

September 12, 2018

We’ve been lucky enough to have Maddox home with us since he was diagnosed at 6 months old. My husband works nights, so he watches him during the day. We pulled him from daycare at 6 months because we were worried about other kids throwing things at him, and potentially him making the wrong move […]

2018 Gears for Good Itinerary

September 7, 2018

The 2018 Gears for Good Ride takes place Sept. 21-23 from West Virginia to Washington, D.C. Here’s your itinerary for the ride!      

Genentech Announces the Launch of New Safety Website

September 3, 2018

Genentech has announced a new web portal for patients and caregivers intended to provide timely and accurate information on targeted serious adverse events of interest for HEMLIBRA. Visit the safety website: http://www.emipatientinfo.com/. Earlier this year, Genentech launched a similar site specifically for health care providers. In announcing the launch, Genentech stated “This website is meant to […]

Dear Addy: Inviting Legislators to Your Event

September 3, 2018

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 […]

Phase III Results for Genentech’s Hemlibra Published in New England Journal of Medicine

August 31, 2018

The following is an excerpt from a press release from Genentech. Read the press release in its entirety here.  Genentech, a member of the Roche Group, announced that pivotal data from the Phase III HAVEN 3 study, which evaluated HEMLIBRA® prophylaxis administered every week or every two weeks in adults and adolescents aged 12 years or […]

Bayer Receives FDA Approval for Jivi, New Hemophilia A Treatment With Step-Wise Prophylaxis Dosing Regimen

August 31, 2018

The following is an excerpt from a press release from Bayer. Read the press release in its entirety here.  Bayer announced that the U.S. Food and Drug Administration has approved Jivi® for the routine prophylactic treatment of hemophilia A in previously-treated adults and adolescents 12 years of age or older. The initial recommended prophylactic regimen […]

Washington Wire: August 2018

August 31, 2018

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 […]

uniQure Announces First Patient Treated in Dose-Confirmation Study in Patients with Hemophilia B

August 24, 2018

The following is an excerpt from a press release from uniQure. Read the press release in its entirety here.  uniQure, a leading gene therapy company advancing transformative therapies for patients with severe unmet medical needs, announced it has treated the first patient in its Phase IIb dose-confirmation study of AMT-061, an investigational AAV5-based gene therapy […]

Word from Washington: Association Health Plans Infographic

August 23, 2018

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: Project CALLS Infographic

August 20, 2018

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 […]

Word from Washington: Short Term Health Plans Infographic

August 15, 2018

On August 1, 2018, the Trump Administration issued a final rule expanding the scope of short-term, limited duration 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 […]

Infusing Love: Wings To Fly

August 15, 2018

Next week, my 15-year-old son with severe hemophilia A will go back to school. Normally at this point in the summer, I’ve done my due diligence by asking for his teachers’ names, ensured his schedule doesn’t have him running all over campus, and asking for a meeting with the powers that be to teach them […]

Intern Introspective: That’s a Wrap for Alexandra and Catherine

August 10, 2018

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: […]

U.S. District Court in Delaware rules against Shire in preliminary injunction

August 8, 2018

On Aug. 7, 2018, the U.S. District Court in Delaware ruled against Shire in its request for a preliminary injunction against Roche AG from creating, transporting and marketing its recently-approved drug Hemlibra in the U.S., which received FDA approval to treat people with hemophilia A with inhibitors in 2017. This ruling means there are no […]

Spark Therapeutics investigational trail moves into Phase 3

August 7, 2018

The following is an excerpt from a press release from Spark Therapeutics. Read the press release in its entirety here. Investigational SPK-8011 moving to Phase 3 As of the July 13 data cutoff, 12 participants in the Phase 1/2 trial have received a single administration of investigational SPK-8011, including two at a dose of 5×1011 […]


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