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Five New Developments in Hemophilia

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

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ABC’s Secrets and Lies Dishonors Hemophilia Patients

ABC’s Secrets and Lies Dishonors Thousands of Americans Living with Hemophilia Calls manageable hereditary condition “nasty byproduct of incest.” WASHINGTON, DC — The Hemophilia Federation of America (HFA) was appalled to learn that the American Broadcasting Company (ABC) show Secrets and Lies referred to hemophilia as a “nasty byproduct of incest” in the episode “The Sister” (S01, E04) that […]

Dear Addy

Dear Addy: COBRA and the ACA

Dear Addy: It used to be when you left or lost your job you could get COBRA coverage until you found a new job. What is happening to COBRA with ACA implementation? What happens now if I lose my job and need health insurance? Sincerely, Daniel, Hemophilia Patient ___________________________________ Dear Daniel, If you lose your […]

Dear Addy

Dear Addy: Medical Benefit vs. Pharmacy Benefit

Dear Addy: My factor is moving from the medical benefit to the pharmacy benefit in 2015 and I’m worried. What should I watch out for? From, Jermane, severe hemophilia B ______________________________________ Thanks for writing, Jermane. We are seeing many insurers around the country making this switch. In several instances, insurers are placing treatment products for […]

Project RED

Project RED: The Sequel

NOTE: This is the second of a two-part story. Click here to read Part I. Working to identify problems and explore solutions among the bleeding disorders healthcare system, the Care Access Working Group (CAWG) continues the efforts on behalf of Project Reaching Everyone Directly (RED). CAWG listens to stories from across the bleeding disorders community […]

Dear Addy

Dear Addy: Out-Of-Pocket Maximums

Dear Addy: I see that my out-of-pocket maximums have gone up this year to $6,600 for an individual and $13,200 for my family. How am I supposed to afford this? With one severe bleed, between hospital stay, medication, and follow-up visits, we could reach this limit within a single month. Sincerely, Sonya, Hemophilia A patient […]

Dear Addy

Dear Addy: Specialty Pharmacy vs. PBM

Dear Addy, What is the difference between a Specialty Pharmacy and a Pharmacy Benefits Manager (PBM), and why should I care? Signed, John, young adult with mild hemophilia A ________________________________________________ Dear John, The Academy of Managed Care Pharmacy (AMCP) defines a specialty pharmacy as “…distinct from traditional pharmacies in coordinating many aspects of patient care […]

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FDA approves Viekira Pak to treat Hepatitis C

The U.S. Food and Drug Administration today approved Viekira Pak (ombitasvir, paritaprevir and ritonavir tablets co-packaged with dasabuvir tablets) to treat patients with chronic hepatitis C virus (HCV) genotype 1 infection, including those with a type of advanced liver disease called cirrhosis. Hepatitis C is a viral disease that causes inflammation of the liver that […]

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Affordable Care Act Eases Concerns for Family with Hemophilia

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 […]

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FDA Makes Statement on MSM Blood Donor Deferral Policy

Today, Commissioner Margaret A. Hamburg of the Food and Drug Administration (FDA) set forth a recommendation to change the current MSM blood donation policy. The current policy, set forth in the height of the AIDS crisis of the 1980s, forbade men who have had sex with men since 1977 from donating blood. The new policy […]

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