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News & Perspectives

Pfizer Issues Update on BeneFIX庐 (coagulation factor IX recombinant)

September 17, 2021

The FDA issued a Partial Rescission of Approval letter in February 2021, in which the indication for routine prophylaxis in children (<16 years of age) was temporarily rescinded due to its having been granted in error because of a pediatric extension of orphan drug exclusivity held by another product until September 12, 2021. The BeneFIX庐 […]

Astellas Reports Fourth Death In Orphan Disease Gene Therapy Clinical Trial

September 14, 2021

The following is a news release from Astellas Pharma Inc. Read the release in full here. Astellas Pharma Inc. (TSE: 4503,聽President and CEO:聽Kenji Yasukawa, Ph.D., “Astellas”)聽reports聽that聽the ASPIRO clinical trial鈥痯articipant, who鈥痙eveloped a serious adverse event as described on聽September 1, passed away聽on September聽9. The cause of death is still pending. Astellas聽is gathering the relevant clinical information and […]

Important Update Regarding Availability of Stimate

September 9, 2021

Important Update Regarding Availability of Stimate Recently, CSL Behring announced that the company has chosen to end their distribution agreement with Ferring Pharmaceuticals for STIMATE庐 nasal spray, effectively thereby removing this medication as a valuable treatment option for patients with von Willebrand Disease (VWD) and mild hemophilia A. Background For over a year now, STIMATE庐 […]

National Hemophilia Foundation and Hemophilia Federation of America Partner for 鈥淭ogether Project鈥

September 8, 2021

FOR IMMEDIATE RELEASE聽 Media Contacts Ilana Ostrin, National Hemophilia Foundation iostrin@hemophilia.org 212-328-3769 Meghan Lawton, Hemophilia Federation of America m.lawton@hemophiliafed.org 607-423-4496 National Hemophilia Foundation and Hemophilia Federation of America Partner for 鈥淭ogether Project鈥 New partnership kicks off with a focus on mental health New York, NY/Washington, D.C.鈥 Today, the National Hemophilia Foundation (NHF) joins the Hemophilia […]

Washington Wire: August 2021

August 31, 2021

With Medicaid much in the news in August, it seemed timely to offer a refresher on how Medicaid is structured, and why it鈥檚 important to many in the bleeding disorders community. Medicaid is a public health insurance program for low-income individuals, families, seniors, and people with disabilities. States set up and run their own Medicaid […]

September is Suicide Prevention Awareness Month

August 31, 2021

September is Suicide Prevention Awareness Month HFA has established a partnership with the American Foundation for Suicide Prevention. There are resources available at the local level and outreach being done in September in particular to address the increasing levels of suicide across the country. Additional Resources Information on聽how to reach a local chapter Information on聽Talk […]

HFA’s Commitment to Anti-Racism

August 24, 2021

Hemophilia Federation of America acknowledges that our staff and the bleeding disorders community hold many identities and experience oppression and biases, including the very real impact of systemic racism and racial prejudice. As an organization, we reject all forms of racism and vow to uphold an anti-racist culture. We recognize that it requires ongoing examination […]

Back to School Checklist for Parents

August 23, 2021

Summer鈥檚 wrapping up and many children, like yours, are preparing to return to school, or to go to school for the first time. If the thought of your child going back to school fills you with dread, you are not alone. It is normal to feel stressed as you assist your child with their transition […]

Cardinal Health Issues Nationwide Recall of Select Monoject™ Flush Prefilled Saline Syringes

August 21, 2021

Read the U.S. Food & Drug Administration’s announcement here. On August 4, 2021, Cardinal Health initiated a nationwide recall of approximately 267 million MonojectTM Flush Prefilled Saline Syringes (0.9% Sodium Chloride). The products have been found to reintroduce air into the syringe after the air has been expelled. This could result in injection of air […]

Dear Addy: Eager Employee

August 19, 2021

Dear Addy: I am a young professional that entered the workforce during the COVID-19 pandemic. Since I was working from home, I did not have to worry about bleeds keeping me out of the office. As I begin to return to work, I worry about how my bleeding disorder may affect my ability to perform […]

Young Adult Podcast: Adulting with a Bleeding Disorder: College

August 19, 2021

So you’re headed to college, and you have a bleeding disorder. Need some advice? In this episode, former HFA Policy and Government Education Summer Intern, Will Hubert, chats with Matt Delaney and Chantel Winslow about their experiences navigating college with a bleeding disorder. For more information聽email Kimberly Ramseur, Senior Manager for Policy & Advocacy at […]

Back To College Check List

August 16, 2021

Summer鈥檚 wrapping up, and many young adults, like you, are preparing to return to their college campus, or to step foot on campus for the first time. If the thought of going back to school fills you with dread, you鈥檙e not alone. It鈥檚 normal to feel stressed or lonely sometimes, especially as you transition away […]

Intern Introspective: Final Update from our 2021 Class

August 13, 2021

The HFA team welcomed a new group of students to our summer 2021 internship program! They participated in our annual Advocacy internship virtually, developing their passion in health care policy and self-advocacy. They participated in regular webinars and online training about legislative, policy and advocacy issues, learning more about hearings and what it means to […]

HFA Launches Mental Health Courses

August 10, 2021

The Hemophilia Federation of America鈥檚 Learning Central now offers a Mental Health and Wellbeing courses, which provides a library of information and resources that you can explore at your own pace and revisit at any time. Specific topic areas include anxiety, suicide, trauma, pain, depression, grief and more. HFA staff had its first conversation about […]

A Letter from the Board Chair

August 10, 2021

Hi Friends, With spring upon us and everything in full bloom, I hope you鈥檝e had a good start to the year and found time to recharge and energize. My husband and I were able to spend some quality time with a few family members. I’ve been loving spending time in my new backyard garden 鈥 […]

Career Conversations: A Helping Forward Webinar

August 10, 2021

August 24 | 8:00 pm ET Have you ever faced a barrier to employment because of your bleeding disorder or financial issues? You’re not alone! Join us as we speak to community members who are overcoming barriers and achieving their career goals. We鈥檒l also recognize recipients of HFA’s Job Readiness Grants and share how you […]

It’s Ok to Be Sad

August 9, 2021

How I fight against hemophilia and depression. By Michael Bishop, staff writer and content design specialist for HFA鈥檚 Learning Central. I鈥檝e been wanting to write this article for a few months now. It seems like the conversation surrounding mental health is one constantly being had in the hemophilia community, and even so, is the one […]

Gilead Warns of Counterfeit HIV Medication Being Distributed in the United States

August 6, 2021

The following is sourced from Gilead. Read the update in its entirety “Gilead Warns of Counterfeit HIV Medication Being Distributed in the United States”. Click to view the original press release. Foster City, Calif., August 5, 2021聽鈥 Gilead Sciences has become aware of tampered and counterfeit versions of its once-daily single tablet HIV treatment regimen […]

Intern Introspective: Updates from our 2021 Class

August 6, 2021

The HFA team is excited to welcome a new group of students to our summer 2021 internship program! They will be participating in our annual Advocacy internship virtually, developing their passion in health care policy and self-advocacy. They will be participating in regular webinars and online training about legislative, policy and advocacy issues, learning more […]

2021 Virtual Young Adult Advocacy Summit

August 5, 2021

Every year, HFA holds an inspiring and fun Young Adult Advocacy Summit (YAAS)聽to introduce young adults to legislative and personal advocacy in a safe and supportive manner with hands-on training and peer support. Our outreach to legislative offices on Capitol Hill and federal agencies empowers participants to apply their knowledge and experience in their communities. […]

Infusing Love: A Breakfast with Love

August 5, 2021

I realized that cooking with care and love for my family did make a difference and that they noticed it every day. 鈥擜na, hemophilia mom On a typical day, mornings include waking up, getting out of bed, drinking coffee, taking a bath and starting your daily routine. The kids are getting ready for school, and […]

Ryan Seeley Shares How He Copes with Mental Health Issues

August 2, 2021

By Melanie Padgett Powers, Managing Editor Ryan Seeley, of Orchard Park, New York, has dealt with mental health issues for most of his life. About 10 years ago, Seeley, now 52, was forced to retire from the nursing career he loved and go on disability. He has severe hemophilia A and multiple chronic illnesses, including […]

HFA Focuses on Mental Health & Wellness in 2021

August 2, 2021

By Ann LeWalk, MA, HFA Vice President of Education聽 In the best of times, people with bleeding disorders are at a greater risk of depression. However, during the COVID-19 pandemic, the isolating effects of a chronic disorder, coupled with the forced social distancing, has only magnified mental health issues in the bleeding disorders community.聽 Recognizing […]

How is Gene Transfer Therapy Research Designed to Work?

August 2, 2021

Provided by and printed with permission by BioMarin It鈥檚 not magic鈥攊t鈥檚 science in progress. Many gene therapies are under investigation and some have been approved for use for conditions other than hemophilia A or B. The risks and benefits of each gene therapy are evaluated independently, and if a clinical trial for a particular gene […]

Limits on Copay Assistance Can Threaten Families鈥 Financial Security

August 2, 2021

By HFA Policy and Advocacy Team, with assistance from an actuarial professional For many in the bleeding disorders community, drug manufacturer copay assistance programs are a source of financial relief and the sole protection against perpetually high out-of-pocket health care costs. Unfortunately, health insurers, citing the need to curb medical inflation, are increasingly refusing to […]

Intern Introspective: Updates from our 2021 Class

July 30, 2021

The HFA team is excited to welcome a new group of students to our summer 2021 internship program! They will be participating in our annual Advocacy internship virtually, developing their passion in health care policy and self-advocacy. They will be participating in regular webinars and online training about legislative, policy and advocacy issues, learning more […]

Washington Wire: July 2021

July 30, 2021

Administration Issues First Rule on the No Surprises Act On July 1, the Administration issued a first set of rules implementing the聽No Surprises Act. The statute and rules target the all-too-common problem of surprise or balance billing. Surprise billing can happen when a patient inadvertently gets services from an out-of-network (OON) health care provider. Maybe […]

Infusing Love: 504 Plans

July 28, 2021

Hello, my name is Lupe Torres! I would like to start by thanking everyone for the opportunity to let me share my experience with the 504 plans. First, here is a little bit about me and my family. I live in the city of Las Vegas, and I have three children, two sons and one […]

State of the States: Spring/Summer 2021

July 26, 2021

  Six new states enact prohibitions against copay accumulator adjusters Bills preventing health plans from pocketing the cost-sharing assistance provided by manufacturers or non-profits (and refusing to apply it to a consumer鈥檚 deductible or out-of-pocket maximum) were signed into law this session in six additional states. The victories in Arkansas (H.B. 1569), Connecticut (S.B. 1003), […]

Intern Introspective: Updates from our 2021 Intern Class

July 22, 2021

The HFA team is excited to welcome a new group of students to our summer 2021 internship program! They will be participating in our annual Advocacy internship virtually, developing their passion in health care policy and self-advocacy. They will be participating in regular webinars and online training about legislative, policy and advocacy issues, learning more […]


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