Infusing Love: Opening Our Hearts & Home

November 9, 2017

When I got married 19 years ago, I never thought I would be a foster parent to over 40 children with special needs. It never occurred to me that I would have the blessing of being a stay-at-home mom for 14 years. I never would have thought I would end up with six forever children […]

Leading Bleeding Disorders Advocacy Organizations File Hemophilia Discrimination Complaint Against Wellmark Blue Cross and Blue Shield

August 15, 2017

– Complaint argues Wellmark’s withdrawal from the Iowa marketplace discriminates against protected health conditions under the ACA, including hemophilia, and its disclosure of a patient’s personal health information violates HIPAA WASHINGTON, Aug. 15, 2017 /PRNewswire-USNewswire/ — The National Hemophilia Foundation (NHF), Hemophilia Federation of America (HFA), and Hemophilia of Iowa (HOI) filed a complaint today with […]

HFA Honors Congressional Representatives as Champions for Chronic Illness

May 24, 2017

On May 24, 2017, we hosted our 4th Annual Patient Fly-In in Washington, DC alongside an online Virtual Hill Day. As they consider HR 1628, the American Health Care Act (AHCA), the Senate has indicated that they intend to start from scratch on health reform and they need to hear from their constituents when crafting their plan. […]

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: Affordable Care Act Eases Concerns for One Family Date: December 25, 2014 By: Christopher Weaver Source: The Wall Street Journal Jaime Hood and her family were among the health law’s biggest winners in 2014. Ms. Hood said she enrolled […]

The Silent “Carriers” of Hemophilia

November 13, 2014

Women have been the silent “carriers” of hemophilia and lived with other undiagnosed bleeding disorders for too long. HFA is committed to providing women with the information and support they need to reach a diagnosis and continue that support through the stages of their life with a bleeding disorder. HFA’s Blood Sisterhood program was established […]

Boston Globe: Specialty Drugs Transform Lives — But At a Cost

July 21, 2014

Every year, Cora Higson fills out a sheaf of forms and waits several long, anxious days to learn whether a charity will pay for the drug she needs to breathe. The medication — Tracleer — is so essential, Higson says, that she is supposed to call her doctor immediately if she misses a dose. But […]

NOLA Times-Picayune: New Problem for Patients with Chronic Diseases

May 16, 2014

By Bruce Alpert, | Times-Picayune WASHINGTON — A new federal rule governing the Affordable Care Act allows insurance companies providing coverage under the law to reject premium payments from charities that help people with chronic diseases obtain health care. The CMS rule has drawn protests from groups such as the Hemophilia Federation of America […]

High-Cost ‘Specialty Tier’ Prescription Drugs Under Scrutiny in PA

November 19, 2013

If you have hemophilia, multiple sclerosis or any number of other hard-to-treat diseases, the cost of your medications alone could reach into six figures, depending on your insurance coverage. “It’s roughly $15,000 a month, and from that I’m lucky to have good insurance so we have good co-pay structure, co-insurance,” said Nick Vizzoca, whose 13-year-old […]

Adopted into Hemophilia

October 15, 2011

Matt and Anna Landseadel knew little about hemophilia when they chose to bring six-month-old Chris into their home. “All I heard was ‘Six-month-old baby,’” Anna says with a smile, explaining how they came about fostering a child with severe hemophilia A. Chris, now seven, has since been adopted into the Landseadel family, along with his […]

Medical mystery: UMass doctors race to counter rare blood disorder

September 2, 2011

By Geraldine A. Collier Courtesy of Worchester Telegram & Gazette Doctors are taught in medical training to “look first for the horses, not the zebras.”  In other words, look first for the typical causes of symptoms before exploring more exotic possibilities. But, former Worcester School Superintendent John Durkin wouldn’t be alive today if his doctors at […]

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