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Infusing Love: Broken, But Not Beaten

July 2, 2019

    Winter weather has always raised my hemophilia mom radar. Icy sidewalks make me very nervous and I鈥檝e yelled out, 鈥淚ce ahead,鈥 many times over the last 15 years in warning to Thomas. But as we all know, we can鈥檛 be with our kids all day, every day and accidents are bound to happen. […]

Dear Addy: Virtual Hill Day

July 2, 2019

Dear Addy, I recently saw HFA post on Facebook about an advocacy day on Capitol Hill. I wasn鈥檛 able to participate on the day of the event; can I still get involved? Signed, Advocacy Amplified Dear Advocacy, Yes! The posts you saw were in conjunction with HFA鈥檚 annual Patient Fly-in and Virtual Hill Day on […]

Washington Wire: June 2019

June 28, 2019

Featured Stories: HFA held a Patient Fly-in and Virtual Hill Day聽on June 10, 2019. Twenty-four community members from 14 different states came to Washington, D.C. to tell their lawmakers about living with bleeding disorders 鈥 and to explain what people in our community need in terms of quality, affordable health coverage. Fly-in participants also urged […]

Bayer to present new data at Congress of International Society on Thrombosis and Haemostasis

June 27, 2019

The following is an excerpt of a press release from Bayer. Read the press release in its entirety here. Bayer will present new data highlighting clinical outcomes from its hemophilia A portfolio, which include long-term data from the PROTECT VIII investigational study evaluating use of Jivi庐 antihemophilic factor (recombinant) PEGylated-aucl. These data will be presented […]

Infusing Love: Tattoos

June 26, 2019

  Our son, Michael, recently surprised us with the news that he was going to get a tattoo! I know, I know, he is 26 years old and can make his own decisions.聽But he still has severe hemophilia B with inhibitors. I got that knot in my stomach that all moms get 鈥 it鈥檚 a […]

Intern Introspective: Hitting the Ground Running

June 21, 2019

Earlier this month, HFA introduced you to Jasmin and Dylan, our summer Policy and Government Relations Interns. Jasmin and Dylan have been busy in D.C., attending congressional hearings and learning the ropes of working for a national nonprofit organization. During their second week, Jasmin and Dylan experienced first-hand the planning and execution of our sixth […]

Infusing Love: Singing the Praises of Fathers

June 19, 2019

I have to admit this blog gave me extreme anxiety about writing.聽Not in the respect that my father (Thomas Gibson), my husband (Alan) nor my father-in-law (James Hooper) are horrible fathers. It鈥檚 just very difficult to express my absolute gratitude to these individuals.聽These three fathers and grandfathers play such an important and vital role both […]

Intern Introspective: Welcome Jasmin and Dylan

June 7, 2019

Hemophilia Federation of America is pleased to introduce our Summer 2019 Policy and Government Relations Interns, Jasmin Wyatt and Dylan Edwards. As members of the bleeding disorders community, they understand the mission of HFA firsthand. Jasmin and Dylan were selected for the internship because of their leadership qualities and interest in the field of policy […]

Washington Wire: May 2019

May 30, 2019

Featured Story: CMS decides against allowing Medicare plans to limit coverage of 鈥減rotected class鈥 drugs. This past month brought some welcome news from the U.S. Centers for Medicare and Medicaid Services. On May 16, CMS released a final rule on drug pricing in the Medicare Advantage and Medicare Part D programs. In that final rule, […]

Infusing Love: 隆Me logr茅 encontrar a m铆 misma!

May 29, 2019

  This blog is translated in English below. Este pasado d铆a de las madres celebr茅 mi a帽o n煤mero 23 de ser madre. 隆No s茅 ni como esto pas贸 tan r谩pido! En una pesta帽ar de ojos mis hijas han crecido y se han independizado, pero soy una mam谩 muy feliz. Criar a hijas involucra mucho tiempo […]

Dear Addy: History Exhibit

May 20, 2019

Dear Addy, I attended HFA鈥檚 Symposium in San Diego and really enjoyed the history exhibit. Is there a way for me to access the timeline? I鈥檇 like to read more about the history of the bleeding disorders community. Signed, Advocate for the Ages 聽Dear Advocate, Yes! You can access the latest version of HFA鈥檚 historical […]

Word From Washington: CMS Drops Proposal to Allow Medicare Plans to Limit Coverage of “Protected Class” Drugs

May 17, 2019

  The U.S. Centers for Medicare and Medicaid Services (CMS) released a final rule yesterday on drug pricing in the Medicare Advantage and Medicare Part D programs. In its final rule, CMS chose not聽to implement a harmful change that it had initially put forward 鈥 a change strongly opposed by HFA and numerous other patient […]

Infusing Love: An Undeniable Connection

May 14, 2019

If you鈥檝e ever attended HFA鈥檚 Symposium, you probably know that the mom鈥檚 rap session is usually one of the most popular sessions and quite often has the most profound conversations. If you haven鈥檛 been 鈥 a mom鈥檚 rap session is just that 鈥 a chance for moms to sit around the room and talk about […]

Infusing Love: The Ideal Mother’s Day

May 8, 2019

  Most that know me will tell you I do everything for my kiddos. That I spoil them. That I鈥檓 always driving them to after school activities or going to the park, for walks, bike rides, etc. I rarely say no and let them try whatever sports and activities they want to do. I spend […]

Infusing Love: Step Aside, Mom Advocate Coming Through

May 2, 2019

  This past month we had the fight of our lives. My employee insurance runs February through January and my employer offered a new insurance plan this year. Much to our dismay, the insurance would not cover my son鈥檚 factor medication. Our insurance wanted our son to fail on three out of four factor products […]

Washington Wire: April 2019

April 30, 2019

Featured Story: Some relief ahead from accumulator adjusters. Finally some good news regarding accumulator adjusters! Patient advocates, including HFA, have been warning lawmakers that accumulator adjuster programs threaten access to care for people with chronic health conditions. In recent weeks, state and federal lawmakers signaled they have heard this message and took steps to rein […]

Recall Notice: Fentanyl Transdermal Pain Patches Recalled Due to Product Mislabeling

April 23, 2019

The following is from the FDA MedWatch. Read the recall notice in its entirety here. Alvogen Inc. is voluntarily recalling two lots of Fentanyl Transdermal System 12 mcg/h transdermal patches to the consumer level. A small number of cartons labeled 12 mcg/h Fentanyl Transdermal System patches contained 50 mcg/h patches. The 50 mcg/h patches that […]

Dear Addy: 5 Minutes for Project CALLS

April 15, 2019

Dear Addy- I am having a horrific time with my insurance company getting a prior authorization approved. I know I should call Project CALLS, but I simply don鈥檛 have time to be on the phone with the insurance company and Project CALLS. Why is it so important that I let HFA know what鈥檚 going on […]

Infusing Love: Seasons of Change

April 10, 2019

  Life is full seasons, parenting is full of seasons, and most importantly raising a child with a bleeding disorder is full of seasons. Most often when I look back over the seasons the most obvious of seasons are that of survival, like getting from one day to the next or one walking through a […]

Word From Washington: HFA, Others, Urge For ACA Be Upheld

April 1, 2019

17 Patient Groups Urge Appeals Court to Uphold Health Care Law Loss of Patient Protections Would Raise Barriers to Health Insurance HFA joined a group of seventeen patient advocacy organizations in filing an amicus curiae (“friend of the court”) brief today in case of Texas v. United States, pending in the U.S. Court of Appeals […]

Washington Wire: March 2019

March 29, 2019

Protections for people with pre-existing conditions. You may recall that last December, a federal district court ruled in Texas v. United Statesthat the Affordable Care Act is unconstitutional in its entirety. This ruling, if upheld, would: eliminate important protections for people with pre-existing conditions; end the ACA鈥檚 Medicaid expansion; abolish the requirement that health plans […]

Infusing Love: Decisions and Apprehensions

March 20, 2019

  I came back from HFA鈥檚 2018 Symposium pumped. 鈥淭ogether We Rock鈥 was an experience that left me much better equipped to face the many challenges of having a child with a bleeding disorder. Most of all I met other moms that go through similar situations with their own children; some were even from Puerto […]

Dear Addy: Raising Awareness

March 18, 2019

Dear Addy, I鈥檝e been sharing HFA鈥檚 Facts a Day about Bleeding Disorders Awareness Month, but I want to do more. How can I help raise awareness about bleeding disorders? Signed, Ready to Activate Dear Ready to Activate, It鈥檚 wonderful to hear that you are motivated to help spread the word about bleeding disorders! As a […]

Hemophilia Federation of America Recognizes Bleeding Disorders Awareness Month

March 15, 2019

Download this Press Release here. FOR IMMEDIATE RELEASE March 15, 2019 Hemophilia Federation of America Recognizes Bleeding Disorders Awareness Month Monthlong Activities Raise Public Awareness for Bleeding Disorders Washington, D.C.聽鈥 More than 30 years ago, President Ronald Regan designated the month of March as Hemophilia Awareness Month to bring awareness and attention to those living […]

Infusing Love: A Surprising Conference

March 13, 2019

  Parent teacher conferences are synonymous with an interrogation, grilling or even a public debate. I spent about 12 years being on the other side of that debate. I was the one calling the shots, telling parents what their children鈥檚 strengths and weaknesses were academically, socially and behaviorally. I was comfortable having the tough conversations […]

Infusing Love: Facing the Music

March 6, 2019

  It was 2002 when I married Harry, my high school sweetheart. Even then, I never discussed my dad with him because I had to keep my promise. I promised my dad who passed away when I was only 16 to never talk about hemophilia, AIDS, none of it. Harry put the pieces together though, […]

Washington Wire: February 2019

February 28, 2019

Featured Story: State Legislative Sessions Pick Up Steam In last month鈥檚 edition of the Washington Wire, we wrote about steps some states are taking with respect to their Medicaid programs. Here is a brief update on some of the Medicaid-related developments that have happened since then. Utah: the state legislature and Governor acted to override […]

Dear Addy: Manufacturer Copay Assistance & Accumulator Adjuster Programs

February 18, 2019

Dear Addy, I use a manufacturer copay assistance program to help me meet the out-of-pocket costs associated with my clotting factor product. My insurer just notified me that it will no longer apply that assistance to my deductible and out-of-pocket maximums! Can they do that? Signed, Distressed Over Deductibles Dear Deductibles, You have run up […]

Infusing Love:聽 A Brotherly Bond

February 13, 2019

鈥淲atch out for my brother. He鈥檚 a bleeder,鈥 Logan will often say when we are at an interactive birthday party. Logan is Maddox鈥檚 5-year-old brother. He is extremely protective of him. Whenever we are at an event Logan will do his best to 鈥減rotect鈥 his little brother from anyone pushing him too hard or potentially […]

Roche joins the World Federation of Hemophilia Humanitarian Aid Program

February 7, 2019

The following is an excerpt from a press release from Roche. Read it in its entirety here. Roche today announced that it has joined the World Federation of Hemophilia Humanitarian Aid Program, a landmark initiative leading the effort to change the lack of access to care and treatment for people with inherited bleeding disorders in […]


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