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News & Perspectives

Dear Addy: History Exhibit

May 20, 2019

Dear Addy, I attended HFA’s Symposium in San Diego and really enjoyed the history exhibit. Is there a way for me to access the timeline? I’d like to read more about the history of the bleeding disorders community. Signed, Advocate for the Ages  Dear Advocate, Yes! You can access the latest version of HFA’s historical […]

Word From Washington: CMS Drops Proposal to Allow Medicare Plans to Limit Coverage of “Protected Class” Drugs

May 17, 2019

  The U.S. Centers for Medicare and Medicaid Services (CMS) released a final rule yesterday on drug pricing in the Medicare Advantage and Medicare Part D programs. In its final rule, CMS chose not to implement a harmful change that it had initially put forward – a change strongly opposed by HFA and numerous other patient […]

Infusing Love: An Undeniable Connection

May 14, 2019

If you’ve ever attended HFA’s Symposium, you probably know that the mom’s rap session is usually one of the most popular sessions and quite often has the most profound conversations. If you haven’t been – a mom’s rap session is just that – a chance for moms to sit around the room and talk about […]

uniQure Presents Updated Clinical Data on Gene Therapy for Hemophilia B

May 10, 2019

The following is an excerpt from a press release from uniQure. Read the full press release here. uniQure announced updated clinical data in patients treated in the company’s ongoing Phase IIb study of AMT-061, an investigational AAV5-based gene therapy containing a patent-protected FIX-Padua variant, for the treatment of patients with severe and moderately severe hemophilia B. […]

Infusing Love: The Ideal Mother’s Day

May 8, 2019

  Most that know me will tell you I do everything for my kiddos. That I spoil them. That I’m always driving them to after school activities or going to the park, for walks, bike rides, etc. I rarely say no and let them try whatever sports and activities they want to do. I spend […]

uniQure Announces New Preclinical Data in Hemophilia A and Fabry Disease

May 2, 2019

The following is an excerpt from a press release from uniQure. Read the press release in its entirety here. uniQure N.V., a gene therapy company, presented new preclinical data on its gene therapy candidates for the treatment of hemophilia A and for the treatment of Fabry disease during back-to-back oral presentations at the 22nd American Society […]

Infusing Love: Step Aside, Mom Advocate Coming Through

May 2, 2019

  This past month we had the fight of our lives. My employee insurance runs February through January and my employer offered a new insurance plan this year. Much to our dismay, the insurance would not cover my son’s factor medication. Our insurance wanted our son to fail on three out of four factor products […]

Washington Wire: April 2019

April 30, 2019

Featured Story: Some relief ahead from accumulator adjusters. Finally some good news regarding accumulator adjusters! Patient advocates, including HFA, have been warning lawmakers that accumulator adjuster programs threaten access to care for people with chronic health conditions. In recent weeks, state and federal lawmakers signaled they have heard this message and took steps to rein […]

Infusing Love: Letting Him Do It His Way

April 24, 2019

  For some of us hemophilia Moms we went through the time where we had to hold down our son to give him his factor or buy out the dollar store for him to be rewarded for his cooperation! Finally, we get to the point when holding down or rewards are no longer part of […]

Recall Notice: Fentanyl Transdermal Pain Patches Recalled Due to Product Mislabeling

April 23, 2019

The following is from the FDA MedWatch. Read the recall notice in its entirety here. Alvogen Inc. is voluntarily recalling two lots of Fentanyl Transdermal System 12 mcg/h transdermal patches to the consumer level. A small number of cartons labeled 12 mcg/h Fentanyl Transdermal System patches contained 50 mcg/h patches. The 50 mcg/h patches that […]

Sangamo and Pfizer Announce Phase 1/2 Interim Data for Investigational Hemophilia A Gene Therapy

April 15, 2019

The following is an excerpt from a press release from Sangamo Therapeutics. Read the press release in its entirety here. Sangamo Therapeutics Inc., a genomic medicine company, and Pfizer Inc. announced interim data from the Phase 1/2 Alta study evaluating investigational SB-525 gene therapy for severe hemophilia A. Data indicate that SB-525 was generally well-tolerated […]

Dear Addy: 5 Minutes for Project CALLS

April 15, 2019

Dear Addy- I am having a horrific time with my insurance company getting a prior authorization approved. I know I should call Project CALLS, but I simply don’t have time to be on the phone with the insurance company and Project CALLS. Why is it so important that I let HFA know what’s going on […]

Infusing Love: Seasons of Change

April 10, 2019

  Life is full seasons, parenting is full of seasons, and most importantly raising a child with a bleeding disorder is full of seasons. Most often when I look back over the seasons the most obvious of seasons are that of survival, like getting from one day to the next or one walking through a […]

Word From Washington: HFA, Others, Urge For ACA Be Upheld

April 1, 2019

17 Patient Groups Urge Appeals Court to Uphold Health Care Law Loss of Patient Protections Would Raise Barriers to Health Insurance HFA joined a group of seventeen patient advocacy organizations in filing an amicus curiae (“friend of the court”) brief today in case of Texas v. United States, pending in the U.S. Court of Appeals […]

Washington Wire: March 2019

March 29, 2019

Protections for people with pre-existing conditions. You may recall that last December, a federal district court ruled in Texas v. United Statesthat the Affordable Care Act is unconstitutional in its entirety. This ruling, if upheld, would: eliminate important protections for people with pre-existing conditions; end the ACA’s Medicaid expansion; abolish the requirement that health plans […]

Infusing Love: Decisions and Apprehensions

March 20, 2019

  I came back from HFA’s 2018 Symposium pumped. “Together We Rock” was an experience that left me much better equipped to face the many challenges of having a child with a bleeding disorder. Most of all I met other moms that go through similar situations with their own children; some were even from Puerto […]

Dear Addy: Raising Awareness

March 18, 2019

Dear Addy, I’ve been sharing HFA’s Facts a Day about Bleeding Disorders Awareness Month, but I want to do more. How can I help raise awareness about bleeding disorders? Signed, Ready to Activate Dear Ready to Activate, It’s wonderful to hear that you are motivated to help spread the word about bleeding disorders! As a […]

Sanofi Genzyme Launches Innovative and Educational Audio Adventure Series for People Treated with ALPROLIX®

March 15, 2019

The following is a press release from Sanofi Genzyme. Find the full press release here. Sanofi Genzyme, the specialty care business unit of Sanofi, announced the launch of a first-of-its-kind audio adventure series designed to provide an engaging and educational infusion experience for ALPROLIX® [Coagulation Factor IX (Recombinant), Fc Fusion Protein] patients and their caregivers. […]

Hemophilia Federation of America Recognizes Bleeding Disorders Awareness Month

March 15, 2019

Download this Press Release here. FOR IMMEDIATE RELEASE March 15, 2019 Hemophilia Federation of America Recognizes Bleeding Disorders Awareness Month Monthlong Activities Raise Public Awareness for Bleeding Disorders Washington, D.C. — More than 30 years ago, President Ronald Regan designated the month of March as Hemophilia Awareness Month to bring awareness and attention to those living […]

Infusing Love: A Surprising Conference

March 13, 2019

  Parent teacher conferences are synonymous with an interrogation, grilling or even a public debate. I spent about 12 years being on the other side of that debate. I was the one calling the shots, telling parents what their children’s strengths and weaknesses were academically, socially and behaviorally. I was comfortable having the tough conversations […]

Infusing Love: Facing the Music

March 6, 2019

  It was 2002 when I married Harry, my high school sweetheart. Even then, I never discussed my dad with him because I had to keep my promise. I promised my dad who passed away when I was only 16 to never talk about hemophilia, AIDS, none of it. Harry put the pieces together though, […]

Washington Wire: February 2019

February 28, 2019

Featured Story: State Legislative Sessions Pick Up Steam In last month’s edition of the Washington Wire, we wrote about steps some states are taking with respect to their Medicaid programs. Here is a brief update on some of the Medicaid-related developments that have happened since then. Utah: the state legislature and Governor acted to override […]

Spark Therapeutics Enters into Merger Agreement with Roche

February 25, 2019

The following is an excerpt from a press release from Spark Therapeutics. Read the press release in its entirety here. Spark Therapeutics , a fully integrated, commercial gene therapy company dedicated to challenging the inevitability of genetic disease, announced today that it has entered into a definitive merger agreement for Roche to fully acquire Spark […]

Genentech joins the World Federation of Hemophilia Humanitarian Aid Program

February 21, 2019

The following is a press release from Roche. Read the press release in its entirety here. Roche announced it has joined the World Federation of Hemophilia Humanitarian Aid Program, a landmark initiative leading the effort to change the lack of access to care and treatment for people with inherited bleeding disorders in developing countries. Together […]

Novo Nordisk Receives FDA Approval for Hemophilia A Treatment

February 20, 2019

The following is an excerpt from a press release. Read the press release in its entirety here. Denmark-based Novo Nordisk received approval from the U.S. Food and Drug Administration for a new treatment for hemophilia A. However, the newly approved medication will not be available in the United States until 2020. Novo Nordisk said the […]

Dear Addy: Manufacturer Copay Assistance & Accumulator Adjuster Programs

February 18, 2019

Dear Addy, I use a manufacturer copay assistance program to help me meet the out-of-pocket costs associated with 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 have run up […]

Infusing Love:  A Brotherly Bond

February 13, 2019

“Watch out for my brother. He’s a bleeder,” Logan will often say when we are at an interactive birthday party. Logan is Maddox’s 5-year-old brother. He is extremely protective of him. Whenever we are at an event Logan will do his best to “protect” his little brother from anyone pushing him too hard or potentially […]

uniQure Announces Updated Clinical Data from Phase IIb Study in Patients with Hemophilia B

February 8, 2019

The following is an excerpt from a press release from uniQure. Read the full press release here. uniQure, a leading gene therapy company advancing transformative therapies for patients with severe unmet medical needs, announced updated clinical data in patients treated in the company’s ongoing Phase IIb study of AMT-061, an investigational AAV5-based gene therapy containing a […]

Roche joins the World Federation of Hemophilia Humanitarian Aid Program

February 7, 2019

The following is an excerpt from a press release from Roche. Read it in its entirety here. Roche today announced that it has joined the World Federation of Hemophilia Humanitarian Aid Program, a landmark initiative leading the effort to change the lack of access to care and treatment for people with inherited bleeding disorders in […]

Infusing Love: Understand Your Stress

February 6, 2019

Caregiving is hard! Did I just state the obvious? I recently saw yet another article about caregivers, caregiver stress, caregiver burn out and the importance of self-care. You know, we’ve all seen them. If you’re like me you may even roll your eyes when you think there are some people that need to be told […]


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