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News & Perspectives

Word from Washington: Short Term Health Plans Infographic

August 15, 2018

On August 1, 2018, the Trump Administration issued a final rule expanding the scope of short-term, limited duration health plans. The rule’s stated aim is to “help Americans struggling to afford health coverage find new, more affordable options.” You can read more about the rule here. HFA and many other patient advocacy groups think the […]

Infusing Love: Wings To Fly

August 15, 2018

Next week, my 15-year-old son with severe hemophilia A will go back to school. Normally at this point in the summer, I’ve done my due diligence by asking for his teachers’ names, ensured his schedule doesn’t have him running all over campus, and asking for a meeting with the powers that be to teach them […]

Intern Introspective: That’s a Wrap for Alexandra and Catherine

August 10, 2018

Earlier this summer we welcomed our summer policy and governmental relations interns to our D.C. office. Alexandra and Catherine 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, Alexandra and Catherine: […]

U.S. District Court in Delaware rules against Shire in preliminary injunction

August 8, 2018

On Aug. 7, 2018, the U.S. District Court in Delaware ruled against Shire in its request for a preliminary injunction against Roche AG from creating, transporting and marketing its recently-approved drug Hemlibra in the U.S., which received FDA approval to treat people with hemophilia A with inhibitors in 2017. This ruling means there are no […]

Spark Therapeutics investigational trail moves into Phase 3

August 7, 2018

The following is an excerpt from a press release from Spark Therapeutics. Read the press release in its entirety here. Investigational SPK-8011 moving to Phase 3 As of the July 13 data cutoff, 12 participants in the Phase 1/2 trial have received a single administration of investigational SPK-8011, including two at a dose of 5×1011 […]

Dear Addy: Mental Health

August 6, 2018

Dear Addy, I’ve heard friends in the bleeding disorders community speak about depression and other mental health concerns. I want to support them, but I’m not sure how to approach this sensitive topic. Can you offer guidance on how to have a conversation with friends about mental health? Signed, Caring Friend Dear Friend, Thank you […]

Word from Washington: New Rules on Short-term Insurance

August 2, 2018

New federal rules, released Aug. 1, roll back limits on short-term health plans. Short-term plans are primarily designed to bridge gaps in coverage that can occur, e.g., when an individual is transitioning between jobs. As such, these plans don’t have to meet Affordable Care Act standards. They can deny coverage and/or can charge higher premiums […]

Washington Wire: July 2018

July 31, 2018

Featured Stories: HFA joined with other patient groups, including many other bleeding disorders groups, in calling on the US government to restore federal funding for ACA navigators. On July 10, the US Centers for Medicare and Medicaid Services (CMS) announced it will further reduce funding for navigators. (Navigators are individuals or organizations that are trained […]

HFA seeks historical materials to honor bleeding disorders in its 25th year

July 26, 2018

Hemophilia Federation of America will recognize 25 years serving the bleeding disorders community in 2019 with plans to display historical records at its annual symposium in San Diego. The Washington, D.C.-based organization is currently collecting archival-type material, such as vintage medical equipment, supplies, rally posters, journals, diaries, newsletters, documents, photographs and other items representing the […]

Intern Introspective: Experiencing a Plasma Collection Center

July 23, 2018

Last week, Alexandra and Catherine had the opportunity to tour Grifols’ plasma collection center in Frederick, Md. Centers like this collect plasma from donors and returns the red blood cells to the donor. The plasma that is collected then undergoes several levels of strict testing and is pooled and parted out to create many different […]

Dear Addy: Supporting Siblings

July 23, 2018

Dear Addy, I have a bleeding disorder and two siblings who are unaffected. My siblings often ask how they can help or what they can do to support me. How do I share with them what I’m feeling and how to best support me? I don’t want to burden them with my issues. Signed, Supportive […]

HFA and NHF Following Developments in Ryan White HIV/AIDS Program in Response to Magazine Article

July 20, 2018

  Many in our community have questions about a recent Slate magazine article that reported that the U.S. Department of Health and Human Services is reallocating money from the Ryan White HIV/AIDS Program to help defray costs of the U.S. Office of Refugee Resettlement as a result of current immigration policy. The Ryan White Program, named for […]

Mental Health Awareness Campaign: Living healthy benefits body and mind

July 19, 2018

Healthy living is beneficial for the physical body, but it can also benefit our mental health. Proper wellness, combined with safe and effective exercise are particularly important for individuals living with bleeding disorders. The National Alliance on Mental Illness reminds us that mental health is a vital part of our overall health. Focusing on our […]

Infusing Love: A Phone Call Away

July 18, 2018

I recently had the opportunity of volunteering to be one of the nurses in the infusion center at the annual HFA symposium. I had the privilege of working with two amazing nurses that work in the hemophilia community. I quickly realized that they both had so much knowledge in the hemophilia world!  l learned so […]

HFA Research Seeks Input on Gene Therapy

July 18, 2018

The field of gene therapy is a hot topic of discussion. With multiple clinical trials ongoing, people with hemophilia are at the forefront of gene therapy research. Has anyone ever asked you about your thoughts and opinions about gene therapy? Here’s your chance to make them known! Hemophilia Federation of America Research is asking people […]

Word From Washington: Latest Affordable Care Act Developments

July 12, 2018

The past week has seen a flurry of news on the ACA front. We’ve summarized some of the latest developments for you here. On July 10, the US Centers for Medicare and Medicaid announced it will further reduce funding for navigators. Navigators are individuals or organizations that are trained to help Americans buy insurance in the ACA […]

Dear Addy: August Recess

July 9, 2018

Dear Addy, I’d like to meet with my legislators at home during Congress’s August recess. How do I schedule a meeting? Signed, Recess Rockstar Dear Recess, August recess is a great time to meet with your federal legislators at home. Members of the House of Representatives will be on recess from July 27 through Sept. […]

Intern Introspective: The First Five Weeks

July 5, 2018

The halfway point of our Policy and Government Relations Internship program is an excellent time for Alexandra and Catherine to reflect on the first five weeks of their internship. In this blog post, Alexandra and Catherine break down what an average week looks like for them as HFA interns and they talk about what the […]

Dear Addy: Accumulator Adjuster Programs

June 25, 2018

Dear Addy, I’ve seen HFA post information on accumulator adjuster programs, but I’m still a little unclear about what this means and how I could be affected. Does HFA have any other resources on accumulator adjuster programs? Signed, Deductible Detective Dear Detective, This is a great question, as accumulator adjuster programs (AAPs) are increasingly common in the […]

Intern Introspective: Experience on Capitol Hill

June 22, 2018

We’ve introduced you to Alexandra and Catherine, our summer Policy interns. They have been busy in D.C., attending Congressional hearings and learning the ropes of working for a national organization. During their second week, they experienced first-hand the planning and execution of our fifth annual Patient Fly-In. Read their experiences through their eyes on how […]

Infusing Love: Hemo Dads

June 20, 2018

This post is written as a special shout-out to my husband; a hemo dad, and all the other caregivers who have patience just like my husband Shane. I’m pretty lucky to have a husband who is very involved in Maddox’s infusions. My husband, Shane, gives Maddox his infusions three times a week. As a full-time […]

Catalyst Biosciences releases update on trial of Factor IX treatment of severe hemophilia B

June 19, 2018

The following is a summary of a press release from Catalyst Biosciences by Dr. Robert Sidonio, a trusted medical advisor. Read the full press release here. On June 18, Catalyst Biosciences provided an update of the progress from its Phase ½ trial investigating the use of FIX variant product, called CB 2679d/ISU304, which is a […]

Grifols Voluntarily Recalls Profilnine

June 15, 2018

Grifols Biologicals is initiating a voluntary product recall of one lot of Profilnine. Grifols Biologicals has determined there is low risk to the patient associated with this issue; however, Grifols Biologicals is requesting the lot to be returned out of caution. Therapy Plasma Product NDC Number Lot Number Size Packaging Expiration Date 68516-3208-2 A1PBB00072 1000 […]

HFA RECOGNIZES CONGRESSIONAL REPRESENTATIVES AS 2018 CHAMPIONS

June 12, 2018

On June 12,2018, we hosted our 5th Annual Patient Fly-In in Washington, DC alongside an online Virtual Hill Day. . With that in mind, patient representatives asked Senators and Representatives to protect affordable coverage for people with pre-existing conditions, ensure that insurance plans provide meaningful coverage and an appropriate scope of health benefits; protect people against potentially […]

Word From Washington: New Challenges to ACA

June 11, 2018

  Earlier this year, Texas together with 19 other states (“plaintiffs”) filed a lawsuit challenging the constitutionality of the Affordable Care Act (ACA). The US Department of Justice (DOJ) – which normally defends federal laws against such challenges – unexpectedly chose to side with the plaintiffs when it filed its brief on June 7th. The DOJ argued that key ACA […]

Dear Addy: Virtual Hill Day

June 11, 2018

Dear Addy, I saw a post on HFA’s Facebook page about a Virtual Hill Day on June 12. Can you tell me more about this and how people outside of D.C. can be involved? Signed, Virtual Visitor Dear Visitor, Every year, HFA hosts a fly-in for members of the bleeding disorders community to come to […]

Intern Introspective: Meet Alexandra and Catherine

June 8, 2018

Earlier this year, we opened applications for a ten-week policy and government relations internship* for this summer. We are excited to introduce you to the two candidates that we selected! Alexandra Abreu Boria and Catherine Anderson, who are part of the bleeding disorders community and have been chosen because of their leadership qualities and interest in […]

FDA GRANTS PRIORITY REVIEW TO GENENTECH’S HEMLIBRA FOR PEOPLE WITH HEMOPHILIA A WITHOUT FACTOR VIII INHIBITORS

June 5, 2018

The following is an excerpt from a press release from Genentech. Read the entire press release here. Genentech, a member of the Roche Group, announced the U.S. Food and Drug Administration has accepted the company’s supplemental Biologics License Application and granted Priority Review for HEMLIBRA  for adults and children with hemophilia A without factor VIII […]

Infusing Love: Aumentando mi conexión con la familia de trastornos hemorrágicos

May 29, 2018

Soy Sylvia Verardi y vivo en la isla de Puerto Rico. Mucha gente no sabe esto, pero Puerto Rico es un territorio estadounidense en el Caribe; está bastante cerca de las Islas Vírgenes de los Estados Unidos. Somos un Estado Libre Asociado y el año pasado pasamos por dos huracanes, Irma y María, que nos […]

Dear Addy: Planning for Summer Activities

May 28, 2018

Dear Addy, This summer, my family has plans to travel and attend camp, in addition to numerous other activities and commitments. Can you recommend resources to help manage my kids’ bleeding disorder while we’re on the go? Sincerely, Summer Savvy Dear Summer, With Memorial Day marking the unofficial start of summer, this is a timely […]


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