Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
Dear Addy, Are there any guarantees that maximum-out-of-pocket expenses won’t continue to rise under the ACA? What, if anything, restricts such a rise? Signed, Not-So-Deep-Pockets __________________________ Dear Pockets, Maximum-out-of-pocket expenses are likely to continue to rise year-after-year. In fact, under the ACA, if the average cost of insurance premiums rises on a per person basis […]
*This article was originally posted on July 17, 2014 in Penn Current and was written by Katherine Unger Baillie. Click here to read this article in its entirety. ____________________________________ Hemophilia is a rare but potentially dangerous disease. People with the condition produce very low levels of clotting factor, the proteins in blood that stop bleeding and help begin the […]
On June 18, 2014, we hosted a successful Hill Day in Washington, DC alongside an online Virtual Hill Day to gain support for bill HR 460, The Patients’ Access to Treatment Act in the US Senate, and other issues like the ability for third-party non-profits to help make payments on behalf of patients, and funding for the Centers for […]
The Centers for Medicare & Medicaid Services (CMS) has determined the following: The evidence is adequate to conclude that screening for Hepatitis C Virus (HCV), consistent with the grade B recommendations by the U.S. Preventive Services Task Force (USPSTF), is reasonable and necessary for the prevention or early detection of an illness or disability and […]
Dear Addy, I am a small business owner with fewer than 25 employees and I have a child with hemophilia. The private insurance I provide my employees has gotten very expensive. I don’t know if I can afford it any more. Can you let me know what options I have? I don’t want to stop […]
The journal Haemophilia has published the results of a six-year study called the Hemophilia Inhibitor Research Study (HIRS) that was designed to test the feasibility of conducting national monitoring for inhibitors among people with hemophilia in the United States. The study collected blood specimens on a regular basis from study participants, which were tested at […]
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 factor […]
From 2005-2009, federally funded Hemophilia Treatment Centers (HTCs) participated in the CDC’s Universal Data Collection (UDC) to help collect vital health information from about 27,000 patients in the bleeding disorders community. Report Highlights from the UDC Report This surveillance report focuses on UDC data collected during years 2005 through 2009. A total of 44,239 visits were made […]
Dear Addy, The last time I took my son to his HTC I was asked to participate in a survey. I didn’t have time to read the consent form because my son wasn’t feeling well that day, so I asked if I could complete the survey at the next visit. The nurse told me I […]
One of the most important things you can do for your health is to have a proper diet. What you put into your body affects how you look and feel. Maintaining a healthy weight is especially important for individuals with a bleeding disorder. Being at a healthy weight can reduce the number of bleeding episodes you experience, […]
Below is a letter from People with Bleeding Disorders and HCV, to the Institutional Review Board (IRB) and National Heart, Lung, and Blood Institute (NIH) office recommending to end recruitment of a clinical study (pINF+RIBA+Telaprevir). People with Bleeding Disorders feel that this study is out-dated and mediocre therapy for Hepatitis C (HCV). ——————————————————— TO: Institutional Review Board, […]
Dear Addy, I know “Obamacare” eliminated lifetime caps on January 1, 2014, but are there still annual caps on healthcare costs? Capped-Out __________________________________ Dear Capped-Out, Happily the answer is no, as of January 1, 2014. Actually, it was on September 23, 2010, that the Affordable Care Act […]
Grifols announced that it will donate up to 20 million units of coagulation therapies in each of the next three (3) years to the World Federation of Hemophilia (WFH). Grifols has been a proud supporter of the WFH and its noble efforts for nearly a decade – and this unprecedented product donation represents its largest […]
Reuters – Biogen Idec Inc is pricing its newly approved long-acting hemophilia drug, Alprolix, to cost U.S. patients, and insurers, about the same per year as older, less convenient therapies whose price can reach about $300,000 annually. The move could pressure rivals such as Pfizer Inc to lower prices for existing hemophilia treatments, which provide […]
Gone are the days when a hemophilia diagnosis meant you could not live a normal life. Now more hemophilia treatments are approved by the Food and Drug Administration (FDA), and people with the condition can better manage bleeding. That’s good news as thousands observe World Hemophilia Day on April 17, 2014. Hemophilia is a rare bleeding […]
Today (April 17th), tens of thousands of families across our nation and around the world will recognize World Hemophilia Day to raise awareness of bleeding disorders. “World Hemophilia Day brings public awareness about bleeding disorders and encourages the development of improved treatment,” said Kimberly Haugstad, Executive Director of Hemophilia Federation of America (HFA). “Worldwide, 1 in 1,000 […]
By: Drew Armstrong Merck & Co. (MRK)’s experimental hepatitis C pill produced clinical trial results positioning the drug as a strong competitor to a potential blockbuster therapy from Gilead Sciences Inc. (GILD) Merck’s two-drug combination once-a-day pill stopped the virus in 98 percent of newly treated patients with few major side effects, according to a […]
Title: Hemophiliac Lifespans Grow By: Ellen Hale Date: Unknown Source: Gannett News Service New medical advances are letting people with hemophilia live longer and better than ever before, researchers say. But the success with the “bleeder’s disease” has brought on new problems few of them foresaw. Suddenly, they are finding they must treat not only the disease, but […]
ad·vo·ca·cy noun \ˈad-və-kə-sē : the act or process of supporting a cause or proposal : the act or process of advocating something The bleeding disorder community has been going to Washington for decades. When we started losing members from the tainted blood products some justifiably angry affected men, women and families decided it was time […]
I am not spontaneous. The “spur-of-the-moment” gene did not get passed along to me, or anyone else in my family. I am definitely a Type A kind of gal. When it comes to holidays, vacations, and family dinners I love to make plans months in advance so it will be a memorable event. Anticipation of […]
What is Inhibitor Family Camp? Hemophilia Inhibitor Family Camp was founded in 2010 by Comprehensive Health Education Services (CHES), and is made possible through an educational grant provided by Novo Nordisk. There are currently two programs held annually, both take place at camps that are part of the Serious Fun Network (formerly known as The Hole […]
Ryan and EJ share their experiences growing up with hemophilia. The future of our community is hopeful with the advancements in care and support from others who understand!
John Jarratt speaks to a group about growing up with hemophilia. This is a longer piece, so grab a cup of coffee and we promise you will gain some perspective from John’s wisdom!
“One Man’s Story” By John Jarratt, M. Ed., L.P.C. Download John’s Story It is my hope that the new millennium will bring about a better understanding of hemophilia and bleeding disorders, along with an improved relationship and collaboration with consumers, chapters, foundations, hemophilia treatment centers, clinics, private practitioners, emergency room personnel, national organizations, and industry. […]
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