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News & Perspectives

Octapharma USA Announces FDA Approval of NUWIQ New Product Strengths

August 23, 2017

Note: The following is an edited version of a press release from Octapharma USA. Read the press release from Octapharma USA in it’s entirety here. Octapharma USA today announced the U.S. Food and Drug Administration (FDA) has approved new product strengths for NUWIQ. The agency approved new single dose NUWIQ vial strengths of 2500, 3000 and 4000 International […]

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 “practicing 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/ — The National Hemophilia Foundation (NHF), Hemophilia Federation of America (HFA), and Hemophilia of Iowa (HOI) filed a complaint today with […]

Spark Therapeutics Releases Preliminary Data for SPK-8011

August 9, 2017

Note: The following is an edited version of a press release from Spark Therapeutics. Read the press release from Spark Therapeutics in it’s entirety here. The company has disclosed preliminary initial data from the Phase 1/2 dose-escalation clinical trial for SPK-8011, a novel bio-engineered adeno-associated viral (AAV) vector utilizing the Spark200 capsid and containing a codon-optimized human factor […]

Infusing Love: Pondering Ports

August 9, 2017

  With a new diagnosis of hemophilia my world was turned upside down. What’s only been 4 months since Maddox was diagnosed feels like a year or two. I feel like I’ve grown so much in just a few months. I have put my life vest on and jumped right in. While, sometimes I’m afraid […]

FitFactor: Men’s Health — Simple Tips to Live By

August 8, 2017

Even though Men’s Health Month was in June, we can always take steps towards a healthier lifestyle no matter what time of year it is. In general, men experience poorer health and die younger than women in the U.S., according to the Department of Health and Human Services. The points below are important for all […]

Dear Addy: Project CALLS 2

August 8, 2017

Dear Addy, I’m 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’re having with your health insurance. You are not alone in your […]

Infusing Love: The Writing is on The Chalkboard

August 2, 2017

As I walk through the aisles of our local office supply store, I can’t help but to get a tinge of sadness. The smell of fresh paper, pens, pencils, and crayons are enough for this former teacher to break down right there in the middle of Office Depot. Not that I am unhappy doing what […]

Help Choose the Inscription on the Hemophilia Memorial

August 1, 2017

The Hemophilia Memorial in the National AIDS Memorial Grove in San Francisco, CA, will be a place where we can remember the people in our community who lost their lives to AIDS. This will be a place of remembrance, healing, and hope. The founding partners of the Hemophilia Memorial, HFA, the National Hemophilia Foundation, and […]

Intern Introspective: That’s a Wrap for La’Brittinee and Paul

July 28, 2017

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

Infusing Love: Mama Is Always Right

July 28, 2017

  The early years of my motherhood experience were pretty lonely. We lived across the country from our extended family and I didn’t know any one in the neighborhood, and frankly, the other moms I did meet weren’t exactly people I wanted to socialize with. My go-to’s for parenting advice were books I had bought […]

ACTION ALERT: Vote Likely on Tuesday, July 25!

July 24, 2017

On Tuesday, the Senate will likely vote on a “Motion to Proceed,” which is the first step to open debate on health reform legislation.  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’s 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 […]

Intern Introspective: Plasma Donation Center Tour

July 21, 2017

Nearing the end of their 10-week internship, La’Brittinee and Paul got an opportunity to tour Grifol’s plasma collection center in Frederick, Maryland. Centers like this collect plasma from donors and then return the red blood cells to the donor in one sitting. The plasma, which undergoes several levels of strict testing, is then pooled and […]

Infusing Love: Meet Kristi

July 19, 2017

  Happy summer to all! I’m honored to join the ranks of the Infusing Love bloggers, and appreciate the opportunity to share my family’s stories and perspectives on living with hemophilia. Our family includes myself, my husband Nick, and our son, Liam, who is 4 ½. We live in Vermont right on the border with […]

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 “discussion draft” 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 […]

FAQ: Hemophilia Memorial at the National Memorial AIDS Grove

July 12, 2017

  How did the Hemophilia Memorial at the National AIDS Memorial Grove come to be? In 2016, National AIDS Memorial Grove reached out asking for support for their “Surviving Voices” project. This is a multi-year oral history project meant to ensure that stories and lessons of the AIDS epidemic are captured, curated, and retained for […]

Infusing Love: Not What I Had Planned

July 12, 2017

I like control. I like order. I like a plan. I like lists. Not in an overly aggressive way, but in a way that makes me feel calm. If I can plan for it, I can feel in control of it. Hemophilia does not work this way. Hemophilia and all the moving parts involved with […]

Spark Therapeutics Presents Updated Interim Hemophilia B Data Supporting Consistent & Sustained Response at ISTH 2017

July 11, 2017

Note: The following is an edited version of a press release from Spark Therapeutics. Read the press release from Spark Therapeutics in it’s entirety here. Spark Therapeutics recently announced that 10 participants in its ongoing Phase 1/2 clinical trial of SPK-9001 for hemophilia B, as of the June 5, 2017 data cut off, had their AIR reduced approximately […]

BioMarin’s Investigational Gene Therapy for Hemophilia A Maintains Average Factor VIII Levels within Normal Range for over One Year

July 11, 2017

Note: The following is an edited version of a press release from BioMarin. Read the press release from BioMarin in it’s entirety here. BioMarin Pharmaceutical Inc. announced an update to its previously reported interim results of an open-label Phase 1/2 study of BMN 270, an investigational gene therapy treatment for severe hemophilia A. The updated results were presented […]

uniQure Announces Updated, Long-Term Clinical Data from Ongoing Phase I/II Trial of AMT-060 In Patients with Severe Hemophilia B

July 11, 2017

Note: The following is an edited version of a press release from uniQure. Read the press release from uniQure in it’s entirety here. uniQure N.V. has announced updated results from its ongoing, dose-ranging Phase I/II trial of AMT-060, its proprietary, investigational gene therapy in patients with severe hemophilia B. The data includes up to 18 months of follow-up from the low-dose […]

Bioverativ Files Complaints Against CSL Behring’s Idelvion

July 10, 2017

Note: This story has been sourced from the website, www.thepharmaletter.com and The Australian Business Review. On Friday, July 7, 2017, Bioverativ 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 […]

Alnylam & Sanofi Genzyme Report Positive Results from Ongoing Phase 2 Study with Investigational RNAi Therapeutic Fitusiran in Patients with Hemophilia A and B With or Without Inhibitors

July 10, 2017

Note: The following is an edited version of a press release from Alnylam. Read the press release from Alnylam in it’s entirety here. Alnylam Pharmaceuticals, Inc. and Sanofi Genzyme, announced today new positive results from the ongoing Phase 2 open-label extension study with fitusiran in patients with hemophilia A and B, with or without inhibitors. These results were presented today […]

Shire Gets Injunction Against Roche Over Emicizumab

July 10, 2017

Note: The following is an excerpt from a Reuters news article. Read the article in full here. Pharmaceutical group Shire said on Sunday it had obtained a preliminary injunction in a Hamburg court against rival Roche over its hemophilia drug emicizumab, alleging incomplete and misleading statements surrounding the treatment. Roche said in an emailed statement it […]

New England Journal of Medicine Publishes Articles in Conjunction with ISTH 2017

July 10, 2017

The New England Journal of Medicine has published two articles and an editioral in conjunction with the International Society of Thrombosis and Haemostasis meeting being held in Berlin, Germany, July 8-13, 2017. The articles include information on novel hemophilia treatment products currently in clinical trial. Click on the links below to read the articles in […]

Genentech Announces Positive Phase III Results for Emicizumab at ISTH 2017

July 10, 2017

Note: The following is an edited version of a press release from Genentech. Read the press release from Genentech in it’s entirety here. Genentech, a member of the Roche Group, announced today that data from HAVEN 1, a Phase III study evaluating once-weekly subcutaneous emicizumab prophylaxis (preventative) in adults and adolescents with hemophilia A with inhibitors, were published […]

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 […]

CDC Health Advisory: Patients Receiving Eculizumab (Soliris®) at High Risk for Invasive Meningococcal Disease Despite Vaccination

July 7, 2017

Per an early release of the Centers for Disease Control and Prevention (CDC) Morbidity and Mortality Weekly Report (MMWR), new information was released today regarding Eculizumab (Soliris®) in patients with the rare blood disorders, paroxysmal nocturnal hemoglobinuria and atypical hemolytic uremic syndrome. Read the MMWR article in full here.  


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