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Deciding to Chase the Dream

November 19, 2014

It is important for individuals with a bleeding disorder to find a form of physical activity that they enjoy. When muscles are used during exercise it helps to  keep them flexible and strong.  Physical activity also helps individuals to maintain a healthy weight which keeps less stress off the joints, and has even proven to […]

Adult Man Shares Seven Decades of Hemophilia Treatment with the FDA

September 23, 2014

On Monday, September 22, 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 […]

Boston Globe: Help For Patients with Chronic Diseases

July 24, 2014

Receiving a diagnosis for a chronic disease whether for yourself or your child can be devastating and confusing. When my son was diagnosed with hemophilia, he was just days old. I often think back to those first days and distinctly remember a conversation with a nurse, who would go on to become a long-term caregiver […]

Dear Addy: Maximum Out-of-Pocket Expenses

July 21, 2014

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 […]

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 […]

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’s Access to Treatment Act (HR 460). This bill would prohibit an insurance company from charging more for drugs […]

Pfizer: Phase 3 Study Postitive Results of Weekly Prophylaxis

July 17, 2014

Once-Weekly Prophylaxis Treatment with BeneFIX® Significantly Reduced Annualized Bleeding Rate Compared to On-Demand Treatment _____________________________ Pfizer Inc. announced the positive results of a Phase 3 study comparing a prophylaxis regimen of BeneFIX® Coagulation Factor IX (Recombinant) 100 IU/kg once-weekly to on-demand treatment in people with moderately severe to severe hemophilia B. The top-line results of the […]

Penn Research Could Improve Hemophilia Treatment

July 17, 2014

*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 […]

How Our Interns Saw The HFA Hill Day

June 26, 2014

Last week,  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’ 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 […]

Dear Addy: Educating the Emergency Room

June 23, 2014

Dear Addy, We went out of town for vacation and I had to take my son to the ER for a bleed due. Unfortunately, none of the doctors were familiar with hemophilia. I knew more than they did. Instead of comforting my son, I spent my time educating doctors. Is there something I can do […]

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 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 […]

Infusing Love: Knocking On Capitol Hill’s Doors

June 19, 2014

Advocacy used to scare the devil out of me. I avoided anything that had to do with going to my state capitol or writing a letter to a legislator.  Advocacy sounded like downright torture and I didn’t want any part of it. A perspective change came in the late fall of 2005. My husband called […]

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’t know if I can afford it any more. Can you let me know what options I have? I don’t want to stop […]

FDA Approves Bayer’s Kogenate® FS for Adult Prophylaxis

May 13, 2014

Bayer HealthCare announced that the U.S. Food and Drug Administration (FDA) has approved a new indication for Bayer’s Kogenate® FS antihemophilic factor VIII (recombinant), for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adults with hemophilia A. The approval is based on data from the SPINART study, in which 84 patients […]

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’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 […]

Everyday Health: Dr. Sanjay Gupta Explains Hemophilia Myths & Facts

April 28, 2014

During Hemophilia Awareness Month we reached over 300K people on social media by posting a fact-a-day about bleeding disorders. Dr. Sanjay Gupta’s staff from Everyday Health, saw our efforts and reached out to us about working together on a piece about hemophilia. In honor of World Hemophilia Day, this informative article launched. __________________________________ Title: Myths and Facts About Hemophilia […]

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) 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: Lifetime Caps vs. Annual Caps

April 20, 2014

                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 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 – 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 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 […]

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

April 15, 2014

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 […]

Mid-Late 1960’s: Hemophilia Treatment

March 14, 2014

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 […]

The Truth About Advocacy

February 27, 2013

              Advocacy used to scare the devil out of me. I avoided anything that had to do with going to my state capitol or writing a letter to a legislator.  Advocacy sounded like downright torture and I didn’t want any part of it. A perspective change came in the […]

Living With A Bleeding Disorder

November 21, 2009

Features: Terry Lamb, Karl Weixler, Tera Griffith & Tye Cowans.  These four individuals share what life is like being a part of the bleeding disorders community.


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