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Washington Wire: July 2020

July 31, 2020

Click Below to Translate Page to Spanish. Product recall announced On July 21, CSL Behring and Ferring Pharmaceuticals announced a聽recall聽of multiple lots of Stimate (desmopressin),聽in the United States and in other countries around the world. The recall was prompted by the manufacturer鈥檚 discovery of out-of-specification levels of the active ingredient in the marketed product. This聽announcement […]

Intern Introspective: An Average Week

July 30, 2020

It鈥檚 hard to believe, but our summer interns are more than halfway through their time with us this summer. In this blog post Will and Tameelah give you an inside look into an average week in the life of an intern, and in Will鈥檚 words, 鈥渉opefully inspire some intrepid young person to apply for this […]

Infusing Love: The Power of Symposium

July 29, 2020

  Attending HFA鈥檚 Symposium has always fascinated me. I have attended a few symposiums with my family: St. Louis, Cleveland, Las Vegas, and San Diego. During symposium, I networked with individuals who were in various fields: social workers, physicians, nurses, physical therapists, and patients.聽 Days were filled with inspirational kickoff and educational breakout sessions. There […]

Joint Statement on Recall of Stimate

July 22, 2020

Click Below to Translate Page to Spanish. On July 21, CSL Behring and Ferring Pharmaceuticals announced the recall of multiple lots of Stimate (desmopressin)聽in the United States, as part of a global recall. This聽troubling聽announcement has raised many questions on the part of national and international patient organizations and community members. Today, HFA and NHF have聽submitted […]

RECALL NOTICE: Voluntary Recall of Stimate (Desmopressin Acetate)

July 21, 2020

Click Below to Translate Page to Spanish. Late today (July 21, 2020), HFA and NHF learned of a聽pharmacy level聽product recall of聽Stimate (desmopressin)聽nasal spray manufactured by Ferring Pharmaceuticals,聽and聽distributed in the U.S. by CSL Behring. Ferring has prepared a Health Hazard Safety Evaluation, warning that 鈥渢here is a reasonable probability that the use of, or exposure to, […]

Dear Addy: Family Planner

July 21, 2020

Dear Addy, My high school sweetheart and I are in our senior year of college and recently began a conversation about life after school. Are there any resources for us to learn more about starting a family when you know you are a carrier or have a history of bleeding disorders in your family?聽 Signed, […]

Infusing Love: How Do Moms 鈥淒o鈥 a Virtual Symposium?

July 15, 2020

  We are now four or five months into this very bizarre time of the COVID-19 Pandemic. If you鈥檙e like me, 聽you鈥檙e not getting any more used to this 鈥渘ew normal鈥 but rather more than ever, ready for it to be over. While we may be ready to get back to life the way it […]

Intern Introspective: Making Our Mark

July 6, 2020

Earlier this summer, we introduced you to Will and Tameelah, our summer Policy and Government Education interns. Both young adults have been active in their local bleeding disorders community and are passionate about keeping their peers involved. This week we asked Tameelah and Will to share how they want to make their mark in our […]

Infusing Love: You Are Missed

July 1, 2020

You know what I miss? You. I miss you. I miss looking into your eyes, I miss tearing up when I try to explain my struggles and listen to yours. I miss smiling with you when I tell you about my adventures and you tell me yours. I鈥檝e been a part of the bleeding disorder […]

Washington Wire: June 2020

June 30, 2020

U.S. Department of Health and Human Services releases rule paring back anti-discrimination provisions On June 12th, the HHS Office of Civil Rights released a final rule聽re-interpreting anti-discrimination provisions of the Affordable Care Act. The new rule removes explicit patient protections against discrimination by health care providers and insurers. HFA joined with twenty-eight other patient and […]

A Closer Look at Hemophilia Management: Improving Outcomes with Personalized Care Now Available On-Demand

June 24, 2020

A Closer Look at Hemophilia Management: Improving Outcomes with Personalized Care is聽now available On-Demand.聽The聽RareDisease Live video education session was presented by National Organization for Rare Disorders, Inc. (NORD) in partnership with Hemophilia Federation of America and the National Hemophilia Foundation in June 2020. Hemophilia A, also called factor VIII (FVIII) deficiency or classic hemophilia, is […]

Intern Introspective: Meet Our 2020 Policy & Government Relations Interns

June 19, 2020

My name is Tameelah Dawson. I am 21 years old from Lexington, S.C., and currently a senior at Claflin University in Orangeburg, S.C., pursing a bachelor鈥檚 degree in psychology. I have been heavily active in the hemophilia community for well more than five years. I鈥檝e served as a junior board member for Hemophilia South Carolina […]

Racing Against Time, Medical Researchers, Life Science Companies and COVID-19 Survivors Launch National Campaign to Drive Blood Plasma Donation

June 18, 2020

The following is an excerpt from a press release from CSL Behring. Read the press release in its entirety here. 鈥淭he Fight Is In Us鈥 Campaign Seeks to Mobilize COVID-19 Survivors to Accelerate the Development of Potentially Lifesaving Therapies A coalition of world-leading medical and research institutions, blood centers, life science companies, technology companies, philanthropic […]

Word From Washington: Patient groups warn that Administration policy encourages discrimination in health care

June 16, 2020

HFA joined with twenty-eight other patient and health advocacy groups to issue the following statement 聽regarding a final rule released by the U.S. Office of Civil Rights/HHS on Friday, June 12th. The rule, interpreting anti-discrimination provisions of the Affordable Care Act, removes explicit patient protections against discrimination by health care providers and insurers. The groups鈥 […]

Dear Addy: Avid Advocate

June 16, 2020

Dear Addy, Each year, I travel to Washington, D.C., and my state capitol to meet with my legislators and members of Congress to discuss issues that are most important to the bleeding disorders community. Due to COVID-19, I have heard that in-person visits are no longer viable options. How can I make sure my voice […]

Infusing Love: Pay It Forward

June 10, 2020

鈥淓veryone can be great because everyone can serve.鈥 鈥 MLK Jr. 鈥淪ervice to others is the rent you pay for your room here on earth.鈥 鈥 Mohammed Ali Volunteering is gift. It can be the best things you鈥檒l do 鈥 both for your community and you. For me, there are mental health benefits in getting […]

HFA Statement to the Community/Declaraci贸n de HFA a la comunidad

June 3, 2020

In this unprecedented moment in history as we grapple with a worldwide pandemic, we must also confront the reality of violence and injustice against people of color in our communities and across the nation. The bleeding disorders community knows all too well the effects of inequality, marginalization and the senseless loss of life. While we […]

Infusing Love: La casa y el sal贸n llenos del virus

June 3, 2020

  Un plato lleno de virus y un poco de brillantina es todo lo que se necesit茅 para explicar a mis ni帽as la importancia de lavarse las manos. Cuando mis hijas eran peque帽as enfatizaba fielmente en la importancia de lavarme las manos con agua y jab贸n. Teniendo en cuenta de que ellas tienen un trastorno […]

Washington Wire: May 2020

May 28, 2020

Click Below to Translate Page to Spanish. Federal rule allows health plans to discount manufacturer copay assistance. On May 7, 2020, the U.S. Department of Health and Human Services finalized a rule that affects individuals who rely on聽patient copay assistance programs. The HHS rule (the 鈥2021 Notice of Benefits and Payment Parameters,鈥 or NBPP) allows […]

Washington Wire: Abril 2020

May 20, 2020

Durante el mes de abril, la emergencia de COVID-19 continu贸 dominando las vidas de los estadounidenses y las agendas de los legisladores. Estas son algunas de las novedades del mes. Un cuarto proyecto de ley de alivio de COVID se convirti贸 en ley el 24 de abril. R. 266 repone el Programa de Protecci贸n de […]

Infusing Love: The Overwhelmed Mom

May 20, 2020

When I received Hemophilia Federation of America鈥檚 Infusing Love: A Mom鈥檚 Blog schedule back in January for this year鈥檚 blogs, I thought, 鈥淥k I have plenty of time to think and write the best blog yet for me.鈥 Wrong鈥 As the months went on, the craziness with my boys鈥 school and extracurricular activities and sports, […]

Dear Addy: Cautious to Proceed

May 20, 2020

Dear Addy- I recently learned I am eligible to receive an Economic Impact Payment or 鈥渟timulus check鈥. While I have not received any funds yet, I have received several voicemails stating that I am required by law to provide personal banking information, my social security number and pay a fee before I can receive any […]

Novo Nordisk Notice on COVID-19, Rebinyn庐 and Laboratory Assays

May 19, 2020

Novo Nordisk recently distributed a notice relevant to its product Rebinyn庐,聽raising awareness that one-stage clotting assay results can be significantly affected by the type of activated partial thromboplastin time (aPTT) reagent used, which can result in over or under-estimation of Factor IX activity. The notice which was addressed to HTCs, physicians and other healthcare providers, […]

Mental Health Awareness Campaign: Celebramos el mes de la Concientizaci贸n Salud Mental.

May 15, 2020

隆Salud Mental es para todos! Mayo es el mes de la concientizaci贸n de la salud mental. Este mes sirve para concientizar e informar a el mundo entero de los desaf铆os de salud mental. Tambi茅n, de los esfuerzos que se est谩n haciendo. Reconocemos, que estamos enfrentando un tiempo de aislamiento y encierro y que es muy […]

Word From Washington: HFA Joins With Patient Groups to Urge Supreme Court to Uphold Health Care Law

May 13, 2020

Patient and health advocacy groups representing millions of Americans with pre-existing conditions filed an聽amicus curiae or friend of the court brief urging the U.S. Supreme Court to uphold the Affordable Care Act in the case of聽California v. Texas (previously Texas v. United States). The case is on appeal from lower court decisions invalidating (in whole […]

Infusing Love: Her Wild Man

May 13, 2020

Sometimes I feel that Maddox doesn鈥檛 even have hemophilia, because he鈥檚 such a wild man, and responds so well to his new medication. At first, we were so scared as a family to make the switch. Understanding that every family is different, we didn鈥檛 want to be swayed in the wrong direction. We have seen […]

Word From Washington: HHS Finalizes Rule Allowing Insurers to Exclude Copay Assistance

May 8, 2020

Late yesterday, the U.S. Department of Health and Human Services finalized a rule that affects individuals who rely on patient copay assistance programs. The HHS rule (the 鈥2021 Notice of Benefits and Payment Parameters,鈥 or NBPP) allows health insurers to continue using accumulator adjusters. This means that a health insurer can exclude manufacturer copay assistance […]

Pfizer and BioNTech Dose First Participants in the COVID-19 Vaccine Development Program

May 7, 2020

The following is a press release from Pfizer. Read it in its entirety here. Pfizer Inc. and BioNTech SE announced the first participants have been dosed in the U.S. in the Phase 1/2 clinical trial for the BNT162 vaccine program to prevent COVID-19. The trial is part of a global development program, and the dosing […]

Infusing Love: Tomando Responsabilidad

May 6, 2020

Tomar con responsabilidad una situaci贸n dif铆cil no significa indiferencia. Yo tambi茅n como muchas de ustedes, quiero vencer mis miedos, ser positiva, y hacer frente a las adversidades con la mejor actitud. Pienso que la manera de hacerlo es educ谩ndome. He asistido a algunos cursos, conferencias, y grupos de apoyo que han ayudado mucho en mi […]

NHF Plans to go Virtual with Annual Meeting

May 1, 2020

The following is a statement from the National Hemophilia Foundation regarding their annual meeting. The National Hemophilia Foundation鈥檚 priority has always been the health and safety of the bleeding disorders community. As the COVID-19 pandemic unfolds, it is clear that in the face of an unprecedented situation, we need to make difficult decisions to protect […]


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