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Infusing Love: 驴El Amor Da Empoderamiento?

December 9, 2020

Hola, mis amigas de Infusing Love Moms Blog. Soy Ana, madre de un hijo con hemofilia Tipo B, deficiencia de Factor IX moderado y vivo en El Paso, Texas. Hoy quiero platicar con ustedes de el amor, el agradecimientoy el perd贸n. El amor es, quiz谩, el sentimiento mas hermoso que el ser humano pueda experimentar. […]

Word From Washington: Patient Groups Urge U.S. District Court to Prevent Discrimination Against LGBTQ and Limited English Proficiency Patients

December 9, 2020

More than a dozen patient groups representing millions of Americans with serious and chronic health conditions are urging the U.S. District Court for the Southern District of New York to preserve protections in the Affordable Care Act (ACA) for lesbian, gay, bisexual, transgender and queer (LGBTQ) patients receiving health care services and restore translation notices […]

Washington Wire: November 2020

November 30, 2020

HFA鈥檚 virtual 2020 Patient Fly-in took place over the week of Nov. 16.聽 Sixteen community members connected with their lawmakers via phone and Zoom to describe what it鈥檚 like to live with a bleeding disorder 鈥 and to explain what people in this community need in terms of quality, affordable health coverage. Fly-in participants also […]

HFA Expresses Gratitude to Bleeding Disorders Community

November 25, 2020

With the pandemic and economic crisis still very present in our lives, a message of gratitude could be seen as a clich茅. Instead, they are at the core of my emotions as I tell you how thankful I am for this community. It is with sincerity that I wish you a happy Thanksgiving and express […]

Infusing Love: Boys to Men

November 25, 2020

  I have been 鈥淚nfusing Love鈥 into my son Marques for the past 18 years! I have not only been infusing him with factor, so his blood clotting levels are normal, but I have tried to infuse him with the education he needs to live a long life with hemophilia. I pray! As hemophilia moms, […]

Pfizer Doses First Participant In Phase 3 Study for People With Severe Hemophilia A and B with or Without Inhibitors

November 25, 2020

The following is from a press release from Pfizer. Read it in its entirety here. Pfizer Inc. announced that the first participant has been dosed in the Phase 3 BASIS study of marstacimab (PF-06741086), an anti-tissue factor pathway inhibitor (anti-TFPI) being evaluated for the treatment of people with severe hemophilia A or B, with or […]

uniQure Announces Positive Data from the HOPE-B Pivotal Trial Gene Therapy in Patients with Hemophilia B

November 25, 2020

The following is an excerpt from a press release from uniQure. Read the press release in its entirety here. uniQure N.V.,聽a gene therapy company advancing transformative therapies for patients with severe medical needs, announced positive top-line data from its pivotal, Phase III HOPE-B gene therapy trial of etranacogene dezaparvovec, an investigational adeno-associated virus five (AAV5)-based […]

Dear Addy: ACA for 2021

November 23, 2020

Dear Addy, I know that open enrollment for health insurance begins Nov. 1, 2020. At the same time, I鈥檓 hearing about a Supreme Court case that could overturn the Affordable Care Act (ACA)! As a person with a bleeding disorder, what should I do about health insurance for 2021? Signed, Anxious About Insurance Dear Anxious, […]

HFA Recognizes 2020 Congressional Champions; Hosts Virtual Fly-In

November 18, 2020

Due to ongoing concerns regarding public gatherings and the impact COVID-19 had on in-person legislative visits, Hemophilia Federation of America restructured its annual Patient Fly-In and Congressional Reception experience to an online campaign that took place over the course Nov. 16-20. With that in mind, Congressional visits by patients took place virtually over Nov. 19-20. […]

Patient Groups Urge U.S. Supreme Court to Prioritize Patients and Uphold Health Care Law

November 9, 2020

Protections for Pre-Existing Conditions and Coverage Standards at Risk Twenty patient groups representing millions of Americans with pre-existing conditions are urging the U.S. Supreme Court to prioritize patient protections, including those for people with pre-existing conditions, when it hears oral arguments Tuesday in the case of California v. Texas (previously Texas v. United States). 聽The […]

Global dosing hold in fitusiran trials initiated by Sanofi Genzyme to investigate new adverse events

November 6, 2020

The following is information from the World Federation of Hemophilia, European聽Hemophilia Consortium, and the National Hemophilia Foundation. The WFH, EHC and NHF have learned of and subsequently confirmed a decision by Sanofi Genzyme to initiate a voluntary sponsor-led global dosing hold on its full clinical development program for fitusiran due to the identification of new […]

Okay, So What Can We Do?

November 3, 2020

“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” -Margaret Mead To find an example of the type of group Margaret Mead speaks about in her famous quote, look no further than our bleeding disorders community. From the 1990s with the passage […]

With Patient Perspectives in Mind, ICER Evaluates Hemophilia Therapies

October 30, 2020

On October 30th, 2020, the Institute for Clinical and Economic Review (ICER) held a public meeting to discuss its evidence report on therapies for hemophilia A. ICER is an independent and non-partisan research organization that evaluates the clinical and economic value of prescription drugs, medical tests, and other healthcare and healthcare delivery innovations. For this […]

Washington Wire: October 2020

October 30, 2020

Open Enrollment begins for 2021 insurance plans Open Enrollment聽is a time frame each year when health insurance plans聽are required by law to accept applications from聽new plan聽enrollees regardless of their health history. This also is the time when you can choose to stay with your existing health plan if it is the right one for you. […]

Infusing Love: My Quarantine Teaching Experience

October 28, 2020

Remote learning causes concerns for students with disabilities.聽Because of COVID-19, I found myself using technology as I teach and learn.聽I used to take for granted toilet paper, paper towel, hand sanitizer, rubber/paper gloves, rubbing alcohol, bleach and masks because it was always there at my reach. Now I have found myself shopping for these things. […]

Infusing Love: The Other Side Effects

October 21, 2020

There are new bleeding disorder side effects cropping up all the time. By side effects, I mean the extraneous things we have to manage such as insurance, genotyping and product choice. In a time before all the advancements, a side effect was learning to be an IV nurse and find a vein on a toddler,聽 […]

Dear Addy: Ready to Vote

October 21, 2020

Dear Addy, It鈥檚 been an extremely stressful year due to COVID-19. Elections are coming up fast and I鈥檓 not sure what steps I need to take to vote. Any help? Ready To Vote Dear Ready, I agree this year has presented a lot of new challenges for everyone and learning new ways to cope. As […]

Infusing Love: Living with a Bleeding Disorder in the Pandemic

October 14, 2020

Since March 2020 we have had to get used to a new reality where taking care of our kids鈥 already special health situation has turned even more complicated. How to handle frequent visits to the hospital if the hospital doesn鈥檛 seem like a safe place? Doing virtual schooling had to grow on us, but we […]

Word from Washington: HFA Joins with 32 Other Patient Groups Urging Policymakers to Adopt a 鈥淧atient-First鈥 Policy Agenda

October 13, 2020

A coalition of 33 organizations representing millions of people with pre-existing conditions today released a blueprint listing their top health care priorities for the next Administration. The report elevates the collective voices of patients and urges elected officials to ensure all people living in the United States, including those with pre-existing conditions, have access to […]

CSL Behring Provides Update on Stimate Nasal Spray Availability

October 2, 2020

The following is an excerpt from an update from CSL Behring regarding the availability of Stimate Nasal Spray. Read the update in its entirety here. Ferring Pharmaceuticals Inc. initiated a voluntary, consumer-level recall of all batches of Stimate庐 Nasal Spray (desmopressin acetate) 1.5 mg/mL, which is distributed and sold by CSL Behring LLC.聽 At this […]

Dear Addy: Eager Learner

October 1, 2020

  Dear Addy, One of my favorite things to do is to learn about different health policies and legislation that impacts people living with a bleeding disorder. Right now, I have been limited to only information I can find in my state and Congress. I would like to learn more about what goes on in […]

Washington Wire: September 2020

September 30, 2020

Update on ACA lawsuit The death of eminent Supreme Court justice Ruth Bader Ginsburg on September 18th brought renewed attention to the fate of the Affordable Care Act. As previously reported, a lawsuit challenging the constitutionality of the ACA (California v. Texas) is pending in the Supreme Court. Because Justice Ginsburg was considered a likely […]

Mes de la Herencia Hispana 2020: Nutrici贸n

September 30, 2020

Mi relaci贸n con la hemofilia empez贸 muy temprano en mi vida. Conservo muchos recuerdos, episodios que aun hoy d铆a los tengo grabados en mi memoria. Me llega la imagen de mi padre (que ten铆a hemofilia severa A) acostado en una cama o sentado en una silla teniendo mucho dolor, sin poder caminar y a veces […]

STATE OF THE STATES: Summer 2020

September 22, 2020

Policy and advocacy work is increasingly important at the state level. In an effort to keep you informed about the work happening on the ground at the local level, HFA is debuting a quarterly update, “State of the States.” Stay up-to-date and read about the work happening close to you! The COVID emergency has upended […]

Intern Introspective: Tameelah’s Podcast

September 18, 2020

  As a part of the HFA Policy and Government Education internship, the interns are tasked with creating a final capstone project encompassing what they have learned, culminating in the creation of advocacy and policy programming that is aimed at a young adult audience. The capstone is fully intern-driven, from concept to execution, with support […]

CSL Behring Announces Discontinuation of Mononine Coagulation Factor IX

September 15, 2020

CSL Behring issued the following statement to patient advocacy groups: “CSL Behring is focused on delivering breakthrough therapies to improve patients鈥 lives and meet the changing needs of our patients. Since CSL Behring鈥檚 introduction of MONONINE庐 Coagulation Factor IX (Human) in 1992, advancements have been made for the treatment of Hemophilia B.聽 Over time, patients […]

HFA, NHF, Hemophilia Alliance Request Additional Information Regarding Stimate Recall

September 14, 2020

Hemophilia Federation of America and the National Hemophilia Foundation continue to follow up on issues arising from the recent recall of Stimate (desmopressin) nasal spray, which is manufactured by Ferring Pharmaceuticals and distributed in the United States by CSL Behring. On September 3, HFA, NHF and the Hemophilia Alliance sent a new joint letter to […]

Intern Introspective: Will’s Reflections

September 7, 2020

  By Will Hubbert As sad as it is to write, my time as an intern at HFA has come to an end. I鈥檝e loved my time here, so I want to use this last reflection as an opportunity to thank my mentors and recommend the program. HFA鈥檚 internship is a truly amazing experience, and […]

Recall Notice: Mylan Initiates Voluntary Nationwide Recall of Four Lots of Tranexamic Acid Injection, USP Due to Carton Label Mix-Up

September 2, 2020

On September 1, 2020, HFA and NHF learned that Mylan N.V. is conducting a voluntary nationwide recall of聽 four lots of Tranexamic Acid Injection, USP 1000 mg/10 mL, packaged in cartons of 10 single-dose 10 mL vials. Tranexamic acid injection is indicated in patients with hemophilia for short term use to reduce or prevent hemorrhage […]

Washington Wire: August 2020

August 31, 2020

Policy and advocacy sessions sparked robust discussions at HFA鈥檚 recently concluded 2020 Symposium! Thank you to all who attended 鈥 it was wonderful to 鈥渟ee鈥 you at our virtual event. For those who couldn鈥檛 join us in real time, you can still view the recorded sessions on your own schedule for the next few months […]


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