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Dear Addy: Maximum Out-of-Pocket Expenses

July 21, 2014

Dear Addy, Are there any guarantees that maximum-out-of-pocket expenses won鈥檛 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 […]

Penn Research Could Improve Hemophilia Treatment

July 17, 2014

*This article was originally posted on July 17, 2014 in聽Penn Current聽and was written by聽Katherine Unger Baillie.聽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 […]

HFA ‘Champion Award’ Given to 4 Members of Congress

June 19, 2014

On June 18, 2014, we hosted a successful Hill Day in Washington, DC聽alongside an online Virtual Hill Day聽to gain support for bill HR 460, The Patients鈥 Access to Treatment Act聽in the US Senate, and other issues like聽the ability for third-party non-profits to help make payments on behalf of patients, and funding for the Centers for […]

CMS: Medicare Will Cover HCV Screening

June 5, 2014

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: Small Business Health Options Program (SHOP)

May 26, 2014

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鈥檛 know if I can afford it any more. Can you let me know what options I have? I don鈥檛 want to stop […]

CDC Six-Year Inhibitor Study Released

May 16, 2014

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 […]

Recognizing National Hepatitis Awareness Month

May 1, 2014

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 […]

CDC: Report on the Universal Data Collection (UDC) Project

April 29, 2014

From 2005-2009, federally funded Hemophilia Treatment Centers (HTCs) participated in the CDC’s聽Universal Data Collection (UDC)聽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: Informed Consent

April 28, 2014

Dear Addy, The last time I took my son to his HTC I was asked to participate in a survey. I didn鈥檛 have time to read the consent form because my son wasn鈥檛 feeling well that day, so I asked if I could complete the survey at the next visit. The nurse told me I […]

How a Liver Transplant Changed My Life

April 25, 2014

One of the most important things you can do for your health is to have a proper diet. What you put into your body聽affects how you look and feel. Maintaining a healthy weight is especially important for individuals with a bleeding聽disorder. Being at a healthy weight can reduce the number of bleeding episodes you experience, […]

Hemophilia Patients Urge NIH & IRB To Stop Ineffective Hepatitis C Trial

April 22, 2014

Below is a letter from People with Bleeding Disorders and HCV, to the Institutional Review Board (IRB)聽and National Heart, Lung, and Blood Institute (NIH) office recommending to end recruitment of a clinical study (pINF+RIBA+Telaprevir). 聽People with Bleeding Disorders feel聽that this study is out-dated and mediocre therapy for Hepatitis C (HCV). ——————————————————— TO: Institutional Review Board, […]

Dear Addy: Lifetime Caps vs. Annual Caps

April 20, 2014

                Dear Addy, I know 鈥淥bamacare鈥 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 Donates Coagulation Medicines to World Federation of Hemophilia

April 18, 2014

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 鈥 and this unprecedented product donation represents its largest […]

Reuters: Biogen Idec Hemophilia Drug Prices On Par With Older Therapies

April 18, 2014

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 […]

FDA: Hemophilia Treatments Have Come a Long Way

April 18, 2014

Gone are the days when聽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鈥檚 good news as thousands observe World Hemophilia Day on April 17, 2014. Hemophilia is a rare bleeding […]

Thousands of Families Observe World Hemophilia Day

April 17, 2014

Today (April 17th), 聽tens of thousands of families across our nation and around the world will聽recognize聽World Hemophilia Day to raise awareness of bleeding disorders. 鈥淲orld Hemophilia Day brings public awareness about bleeding disorders and encourages the development of improved treatment,鈥 said Kimberly Haugstad, Executive Director of Hemophilia Federation of America (HFA). 鈥淲orldwide, 1 in 1,000 […]

Bloomberg News: Merck Data a Potent Rival to Gilead鈥檚 Hepatitis C Pill

April 15, 2014

By: Drew Armstrong Merck & Co. (MRK)鈥檚 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鈥檚 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 […]

Mid-Late 1960’s: Hemophilia Treatment

March 14, 2014

Title:聽Hemophiliac Lifespans Grow By:聽Ellen Hale Date:聽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 鈥渂leeder鈥檚 disease鈥 has brought on new problems few of them foresaw. Suddenly, they are finding they must treat not only the disease, but […]

Right Here, Right Now

February 26, 2014

ad路vo路ca路cy noun \藞ad-v蓹-k蓹-s膿 : 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 […]

To Plan or Not to Plan

January 29, 2014

I am not spontaneous. The 鈥渟pur-of-the-moment鈥 gene did not get passed along to me, or anyone else in my family.聽 I am definitely a Type A kind of gal.聽 When it comes to holidays, vacations, and family dinners I love to make plans months in advance so it will be a memorable event.聽 Anticipation of […]

Inhibitor Family Camp: Our Own Kind of Oz

December 20, 2013

What is Inhibitor Family Camp? Hemophilia Inhibitor Family Camp was founded in 2010 by聽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 […]

A Hopeful Future

July 12, 2011

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 In Action

June 21, 2011

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!

John

October 20, 2009

“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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