HFA News

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 […]

Genentech Launches New Hemophilia Website

September 25, 2020

The following information has been provided by Genentech. “Genentech recently launched a new聽website聽, dedicated to supporting the Hemophilia community. Here you can watch videos, read articles and learn how Genentech is committed to advancing all aspects of life with hemophilia A. Genentech supports the Hemophilia community through a variety of ways including a web series […]

I Know Me Best

September 23, 2020

A visit to an unfamiliar hospital reminds patient of the importance of self-advocacy BY MICHAEL BISHOP, STAFF WRITER Self-advocacy is the quintessential and necessary skill for people with hemophilia. It鈥檚 something I鈥檝e been taught my entire life, and it鈥檚 something on which Hemophilia Federation of America frequently focuses its education. It鈥檚 incredibly important, and I鈥檝e […]

Best One Yet: Bleeding disorders community member creates successful annual fundraising event

September 23, 2020

BY SHAWN NEASE, GUEST WRITER You have got to be kidding me! Are you sure that is just for this year?鈥 That was me after wrapping up this year鈥檚 Delves for Donors fundraising event and checking in with the hosting store owner for a rough total of how much was raised this year. A little […]

HFA鈥檚 Summer Internship Goes Virtual

September 23, 2020

Hemophilia Federation of America has welcomed two advocacy interns for the summer of 2020, but in a new and unique way. For many years, HFA鈥檚 advocacy interns spent 10 weeks of their summer living in Washington, D.C., where the HFA office is located, engaged in hands-on activities related to policy and advocacy. But with travel […]

The Art and Science of Goal Setting and Achieving

September 23, 2020

HFA board member shares valuable tips to accomplish more BY CLYDE J.R. BRAWNER, MBA, HFA BOARD OF DIRECTORS Goal setting is often the foundation of success. We set goals for our education, our finances, our health, our careers plus many other important milestones in our lives. We often think about accomplishing our goals, rarely understanding […]

A Little Peace of Mind: HFA develops relief fund for bleeding disorders community directly impacted by COVID-19

September 23, 2020

BY EMILY ROUSH-BOBOLZ, STAFF WRITER When a pandemic hit the United States in early 2020, no one knew what to expect. Schools and businesses began to close, and people were being laid off from their jobs, but it wasn鈥檛 yet clear how the bleeding disorders community would be directly impacted. It was clear, however, that […]

COVID-19 Resources and Information for the Bleeding Disorders Community

September 23, 2020

Hemophilia Federation of America quickly responded to the needs of the bleeding disorders community during the coronavirus pandemic by creating a hub of valuable information at HFA鈥檚 COVID-19 Hub includes: Patient Care and Product Availability For patients and families concerned about access to care and the availability of bleeding disorders products and services during […]

Project CALLS: Creating Alternatives to Limiting or Lacking Services

September 23, 2020

Hemophilia Federation of America created Project CALLS to collect data and personal stories of how techniques employed by insurance companies create barriers to care for patients. In 2020, HFA will highlight stories of CALLS respondents. In addition to highlighting their stories, the data collected from more than 200 submissions since 2015 offers a baseline view […]

What We Learned About Inhibitors and Where We Need to Go

September 23, 2020

A Summary of HFA鈥檚 Blood Brotherhood & Families Inhibitor Survey Data BY DEBRAN TARVER, STAFF WRITER Many people with hemophilia A or B or type 3 von Willebrand disease (vWD) treat by infusing clotting factor concentrates into their veins, which helps form clots, and stop or prevent bleeding episodes. Of those who infuse with clotting […]

Turned Away

September 23, 2020

Hemophilia organization hopes to change current Medicare reimbursement that leads aging hemophilia patients struggling to enter nursing facilities BY SONJI WILKES, STAFF WRITER During National Hemophilia Foundation鈥檚 Washington Days, NHF announced The Hemophilia Skilled Nursing Facility Access Act had been introduced in both the House and the Senate. This critical legislation will rectify a longstanding […]


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 […]

Genentech Provides Update to US District Court Decision

August 31, 2020

The following is an excerpt from an update from Genentech. Read the update in its entirety here. Genentech has provided a statement surrounding an August 27, 2020 US Federal Circuit Court of Appeals ruling which 聽reverses a previous ruling by the US District Court. In December 2018, the US District Court issued a patent interpretation […]

Genentech Releases Update on Particles Identified in Hemlibra

August 31, 2020

The following is an excerpt from a statement from Genentech. Read the statement in its entirety here. Genentech has announced an update on measures that are being taken in relation to the translucent particles that were identified in Hemlibra庐 (emicizumab-kxwh) in 2019 during a routine examination of product batches as part of quality assurance processes. […]

2020 Symposium Final Night Event Performance

August 29, 2020

A huge thank you to the performers who made HFA’s 2020 Symposium Final Night Event amazing! Learn more about these talented performers from around the world: Ben Seidman聽|聽Magician聽鈥 Penn & Teller’s Fool Us, Mindfreak, Magic Outlaws William Wei-Lang Lin聽|聽Diabolo 鈥 Cirque du Soleil 鈥婼teve Langley | Soap聽Bubble Manipulation聽鈥 Guinness World Records Michael Karas | Juggler聽鈥 […]

HFA Board Elects Officers for 2020/2021

August 29, 2020

At its Aug. 24, 2020 annual meeting, the Hemophilia Federation of America Board of Directors approved its most recent officers to serve on the executive committee. The board of directors approved the following individuals as officers: Allie Ritcey, Chair Steve Long, Vice Chair Gillian Schultz, Secretary Clyde (J.R.) Brawner, Treasurer Carletha Gates, Member at Large […]

Takeda Suspends Screening & Further Enrollment in TAK-754, TAK-748 Clinical Studies

August 21, 2020

The following is an excerpt from an update from Takeda. Read the update in its entirety here. Takeda recently informed HFA of it’s decision聽to suspend screening and further enrollment in聽the TAK-754 and TAK-748 clinical studies, effective immediately. TAK-754 is an AAV8 gene therapy for the treatment of hemophilia A currently in Phase 1/2 clinical聽development, while […]

HFA Responds to News of FDA Action on BioMarin Gene Therapy Application

August 19, 2020

Click Below to Translate Page to Spanish. Today BioMarin announced that the U.S. Food and Drug Administration has issued a letter indicating that BioMarin鈥檚 investigational gene therapy for severe hemophilia A is not ready for approval in its present form. BioMarin says the FDA has asked for two years of follow-up data showing evidence of […]

Dear Addy: Frantic Freshman

August 18, 2020

    Dear Addy, This will be my first year going off to college and I鈥檓 a little bit nervous about it. The prospect of traveling hundreds of miles away from home and my HTC was already daunting, and COVID has only made this big transition feel even bigger. What can I do to make […]

Stimate Recall – CSL Behring & Ferring Pharmaceuticals Announces Extension of Stimate Recall to Consumer Level

August 13, 2020

Ferring Pharmaceuticals announced it was extending the recall of Stimate (desmopressin) to the consumer/user level. Stimate is manufactured by Ferring Pharmaceuticals Inc. and is distributed and sold in the United States by CSL Behring. This marks an expansion of Ferring鈥檚 initial July 2020 plans to conduct a narrower pharmacy-level recall. Under a consumer-level recall, people […]

Infusing Love: All the Adult Things

August 13, 2020

My son, Michael, has severe hemophilia B. He is soon to be 28 years old. Wow! That time flew by! I remember the day we found out he had hemophilia. He was 11 days old. We were shocked, scared and ready to take on this challenge life had given us.聽 We educated ourselves and our […]

BD Announces Voluntary Recall of ChloraPrep™ 3 mL Applicator in Specific U.S. Territories and Countries

August 12, 2020

NOTE:聽The recall does not apply to any states in the United States, it only applies to the U.S. territories of Puerto Rico, Guam, U.S. Virgin Islands, Northern Mariana Islands and American Samoa. Click Below to Translate Page to Spanish. BD (Becton, Dickinson and Company), a global medical technology company, announced a voluntary recall on June […]

Stimate Recall – CSL Behring & Ferring Pharmaceuticals Response to HFA-NHF Letter

August 7, 2020

  Click Below to Translate Page to Spanish. On July 21, 2020, Ferring Pharmaceuticals issued a voluntary recall of Stimate (desmopressin) nasal spray due to 鈥渟uperpotency鈥 鈥 in other words, amounts of desmopressin being higher than specified. Stimate is used to treat von Willebrand disease (VWD) and mild hemophilia A. It is licensed and distributed […]

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