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Intern Introspective: A Day in the Life

July 14, 2016

The halfway point of our Policy and Government Relations Internship program is an excellent time to take stock of our interns鈥 first month or so. In this Intern Introspective, Cami and Eric break down what an average day in the life looks like as an HFA intern.聽 9 am to 10 am – Cami When […]

Intern Introspective: Through Our Eyes

July 1, 2016

Earlier this summer, we introduced you to Eric and Camila, our summer Policy Interns. They have been busy all over DC, attending Congressional hearings, executive briefings, and much more. Recently, they got to experience first-hand the planning and execution of our 3nd Annual Patient Fly-In. Below is their take on the week. _________________________________________________________________________________ What was […]

HFA Champion Award Given to 2 Members of Congress

June 24, 2016

On June 22, 2016, we hosted our 3rd Annual Patient Fly-In in Washington, DC聽alongside an online聽Virtual Hill Day聽to gain support for bill聽HR 1600, The Patients鈥 Access to Treatment Act聽and for HR 3742, The Access to Marketplace Insurance Act, other issues like聽the ability for third-party non-profits to help make payments on behalf of patients, and improving […]

Intern Introspective: Introducing Camila

June 17, 2016

Two weeks ago we introduced you to one of our Policy & Government Relations intern鈥檚, Eric. This week, we are pleased to feature our second summer intern, Camila. _______________________________________________________________________ What school do you attend? What is your major? I am a rising senior at the University of Richmond in Richmond, Virginia. I am completing a […]

Intern Introspective: Introducing Eric

June 3, 2016

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! Eric and Camila are part of the bleeding disorders community and have been chosen because of their leadership qualities and interest in the field of […]

May is Hepatitis Awareness Month

May 1, 2016

In 2001, the Centers for Disease Control (CDC) and Prevention designated the month of May as Hepatitis Awareness Month to bring awareness and attention to those living with viral hepatitis. In the 1980s and 1990s, thousands of people with hemophilia contracted HIV and Hepatitis C (HCV) from the contaminated blood supply transmitted by clotting factorproducts. […]

Letter to FDA Commissioner Regarding Biosimiliar Safety & Approval Process

April 20, 2016

HFA is proud to be part of the Patients for Biologics Safety & Access (PBSA). PBSA is a coalition of 24 patient advocacy organizations dedicated to protecting patient access to safe and effective biologics. Together, this coalition represents millions of Americans who suffer from serious, life-threatening diseases that are difficult to diagnose and treat. As […]

Health Plans鈥 Coverage Of Some Drugs Can Be A Source Of Consumer Confusion

December 21, 2015

Note: The following story was originally published by Kaiser Health News. By Julie Appleby Patients getting chemotherapy or other complex medications may have a sudden panic when shopping for health insurance: Their drugs often don鈥檛 appear to be covered. 鈥淧eople think, 鈥楯eez, what do I do now?鈥欌 said Anna Howard, policy principal at the American […]

Open Enrollment For 2016 Is Here

November 18, 2015

Though Thanksgiving has yet to arrive, it is time to start making your list and checking it twice. No, not that list; the list of the things you need to make sure your health insurance plan covers when your open enrollment period starts. An open enrollment period is the time when individuals can enroll themselves […]

2015 Summer Intern Recap

August 7, 2015

Earlier this summer we welcomed our summer policy & advocacy interns to our DC office. Adam and Matthew 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, Adam and Matthew: Gained […]

HFA Interns Tour Maryland Plasma Center

July 24, 2015

Earlier this summer,聽we introduced you to Adam and Matthew, our summer Policy Interns. These two have been busy all over DC, attending Congressional hearings, Executive briefings, and much more. Last week, Matthew and Adam had the opportunity to tour Grifol’s plasma collection center in Frederick, MD. Centers like this collected plasma from donors, returning the […]

HFA Patient Fly-In: Through Our Interns’ Eyes

July 7, 2015

Earlier this summer, we introduced you to Adam and Matthew, our summer Policy Interns. These two have been busy all over DC, attending Congressional hearings, Executive briefings, and much more. Recently, they got to experience first-hand the planning and execution of our 2nd Annual Patient Fly-In.聽Below is their take on the week, and a bonus […]

HFA Champion Award Given to 4 Members of Congress

June 18, 2015

On June 17, 2015, we hosted our 2nd Annual Patient Fly-In in Washington, DC聽alongside an online聽Virtual Hill Day聽to gain support for bill聽HR 1600, The Patients鈥 Access to Treatment Act聽in the US House and Senate, and other issues like聽the ability for third-party non-profits to help make payments on behalf of patients, and improving access to skilled […]

2015 Advocacy and Government Affairs Interns

June 4, 2015

Earlier this year, we opened applications for a ten week advocacy & government relations internship* for this summer. We are excited to introduce you to the two candidates that we selected! Adam and Matthew are part of the bleeding disorders community and have been chosen聽because of their leadership qualities and interest in the field of […]

Five New Developments in Hemophilia

April 7, 2015

This post first appeared on聽Vector,聽a blog of Boston Children’s Hospital an was written by聽Ellis Neufeld, MD, PhD,聽a hematologist at Dana-Farber/Boston Children鈥檚 Cancer and Blood Disorders Center. 聽 ________________________________________________ From new longer-acting drugs to promising gene therapy trials, much is changing in the treatment of聽hemophilia, the inherited bleeding disorder in which the blood does not clot. […]

Affordable Care Act Eases Concerns for Family with Hemophilia

December 29, 2014

This article originally appeared in the Wall Street Journal. To read it in its entirety, click here. ________________________________________ Title:聽Affordable Care Act Eases Concerns for One Family Date: December 25, 2014 By:聽Christopher Weaver Source:聽The Wall Street Journal Jaime Hood and her family were among the health law鈥檚 biggest winners in 2014. Ms. Hood said she enrolled […]

HFA’s Statement to the FDA’s BPAC on Blood Donation Policy

December 3, 2014

Former HFA Board President Paul Brayshaw recently delivered a statement on behalf of our organization before the Food and Drug Administration’s Blood Product Advisory Committee (BPAC) regarding a proposed change to the policy on blood donations from men who have sexual contact with men. In this statement, Mr. Brayshaw stated that, while聽we do not support […]

Update #2: FDA will Review Study Suggesting Higher Inhibitor Incidence in PUPS

November 20, 2014

The medical journal,聽Blood, came out with a study called,聽Recombinant Factor VIII Products and Inhibitor Development in Previously Untreated Boys with Severe Hemophilia A.聽 This study suggests聽that inhibitor incidence is higher in previously untreated patients (PUPs) with severe hemophilia A that are using聽Kogenate/Helixate. The Food and Drug Administration聽(FDA)聽and European Medicines Agency (EMA)聽have confirmed they will be […]

Are You Ready for Open Enrollment?

November 5, 2014

[glossary_exclude]Summer is over and already it is time to start making your list and checking it twice. No, not that list; the list of the things you need to make sure your health insurance plan covers when your open enrollment period starts. An open enrollment period is the time when individuals can enroll themselves and […]

Update #1: Study Suggests Higher Inhibitor Incidence in PUPS Using Kogenate/Helixate

October 6, 2014

The medical journal, Blood, came out with a study called, Recombinant Factor VIII Products and Inhibitor Development in Previously Untreated Boys with Severe Hemophilia A.聽 This study suggests聽that inhibitor incidence is higher in previously untreated patients (PUPs) with severe Hemophilia A that are using Kogenate/Helixate (Bayer/Nexgen). Click here to read the abstract of this study. […]

An Inhibitor Mom Shares Her Story With the FDA

September 25, 2014

On Monday, September 22, several members of the bleeding disorders community came out to share their experiences with bleeding disorders treatment with the FDA. HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented.聽Patients and advocates of every age, every background, and with several different conditions came out […]

HFA Policy & Advocacy Intern Synopsis

September 24, 2014

Earlier this summer we welcomed our summer policy & advocacy interns to our DC office. Lewis and Maria are part of the bleeding disorders community and were chosen to participate in a 8 week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, Lewis and Maria […]

Leveling with the FDA About Hemophilia Inhibitors

September 23, 2014

On Monday, September 22, several members of the bleeding disorders community came out to聽share their experiences with bleeding disorders treatment with the FDA. HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented.聽Patients and advocates of every age, every background, and with several different conditions came out to […]

HFA’s Executive Director to FDA: Treatment is Not One Size Fits All

September 23, 2014

Several members of the bleeding disorders community came out to聽share their experiences with bleeding disorders treatment with the FDA. HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented.聽Patients and advocates of every age, every background, and with several different conditions came out to share with the FDA […]

Adult Male Disccuses Pain Management and Treatment with FDA

September 23, 2014

On Monday, September 22,聽several members of the bleeding disorders community came out to聽share their experiences with bleeding disorders treatment with the FDA. HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented.聽Patients and advocates of every age, every background, and with several different conditions came out to share […]

Adult Man Shares Seven Decades of Hemophilia Treatment with the FDA

September 23, 2014

Members of the bleeding disorders community came out to聽share their experiences with bleeding disorders treatment with the FDA. HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented.聽Patients and advocates of every age, every background, and with several different conditions came out to share with the FDA their […]

Blood Brother Shares Hemophilia Treatment Experiences With FDA

September 23, 2014

Members of the bleeding disorders community came out to share their experiences with bleeding disorders treatment with the FDA. HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented. Patients and advocates of every age, every background, and with several different conditions came out to share with the […]

HFA Interns Tour MD Plasma Center

July 31, 2014

Recently our summer policy interns, Maria and Lewis, toured a Maryland plasma collection facility to learn the聽multi-step testing and purification process to ensure its safety and efficiency. ______________________________________ 1) Was this your first time visiting a plasma center? What did you expect it to be like? Lewis: This was my first time visiting a plasma […]

HR 460 Change.org Petition

July 18, 2014

  For the past 20 years, we have worked hard to make sure everyone with a bleeding disorders has access to affordable life-saving treatment. One of the ways we do this is to support legislation like the Patient鈥檚 Access to Treatment Act (HR 460). This bill would prohibit an insurance company from charging more for […]

How Our Interns Saw The HFA Hill Day

June 26, 2014

Last week, 聽members of the bleeding disorder community flew to Washington, DC to speak with their US House and Senate representatives asking them to support HR 460, the Patients鈥 Access to Treatment Act. This important piece of legislation prohibits insurance companies from charging more for the drugs that they place into specialty tiers, than they […]


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