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News & Perspectives

And last but not least…a Senate Finance Committee Health Care Reform document

September 16, 2009

The long awaited, Chairman’s mark from the Senate Finance Committee has finally been released.聽 The 223-page document, entitled America’s Healthy Future Act of 2009, underscores the lower costs, quality and affordable health coverage it will provide individuals and families.聽 Chairman Max Baucus declares “the Finance Committee carefully worked through the details of health care reform […]

Will annual premiums average a whopping $30,803 in 2019?

September 16, 2009

Drew E. Altman, Ph.D., President and Chief Executive Officer at the Kaiser Family Foundation highlighted the potential cost of premiums in 2019 in a recent “Pulling It Together” update.聽 Assuming that premium increases over the next ten years revert to the average of the last ten years, 8.7%, he asserts that premiums for a family […]

Comparative Effectiveness Research (CER) highlighted on the HFA Advocacy Page

September 16, 2009

CER has been a priority issue for the HFA.聽 The necessity to cut costs led Congress to address CER in the health care reform debate (although CER is not a “new” issue).聽 Our commitment to education and awareness prompted the need for a document that outlines a definition and summary of CER.聽 聽This document has […]

H.R. 3200, Health care reform legislation is in audio format

September 15, 2009

We Read…You Listen…We ALL Decide!聽 This is the mission statement from a group dedicated to creating audio versions of the lengthy health care reform bills in Congress.聽 Over 80 dedicated volunteers, many of them voice over actors, spent hours recording H.R. 3200.聽 The goal of hearthebill.org is to ensure everyone has an opportunity to familiarize […]

HFA wants YOU to share your VOICE!

September 15, 2009

Jim Dawdy and Alex Ell are highlighted in a video, HFA recently posted on the website’s homepage.聽 Their message:聽 Share your story! 聽Jim and Alex highlight the importance of聽visiting Congress, discussing the issues (lifetime caps), and their love for summer camps that support the bleeding disorders community across the country.聽 HFA appreciates the hard work […]

Alex & Jim

September 14, 2009

Medical Privacy 101

September 14, 2009

Over 4 million businesses, employers, government agencies, insurance companies, billing firms, and all their business associates that may include pharmacy benefits managers, and pharmaceutical companies as well as marketing firms and data miners.聽 Patient consent is no longer required to share health records, no matter how embarrassing or intensely personal the contents may be.聽 While […]

The long view…

September 9, 2009

Every so often it is important to take stock of where you are, where you have been and where you are going in politics. The national debate around healthcare reform has garnered a majority of the TV time and column inches in the newspaper. Events happening in DC right now are critical. Regardless of the […]

CDC: Effect of Antiretroviral Therapy on Risk of Sexual Transmission of HIV Infection and Superinfection

September 9, 2009

Effect of Antiretroviral Therapy on Risk of Sexual Transmission of HIV Infection and Superinfection

Community members take action to self-advocate and petition FDA for change!

September 9, 2009

Theresa Toigo, RPh, MBA Director Office of Special Health Issues Food and Drug Administration (FDA) 5600 Fishers Lane HF-12, Room 9-49 Rockville, MD 20857 Theresa.Toigo@fda.hhs.gov 聽 Dear Ms. Toigo, 聽 We are people with Hemophilia and their supporters. 聽 We recognize and appreciate the recent FDA publication of rules to clarify and expand the process […]

Mr. Wilkes goes to Washington

September 9, 2009

Nathan Wilkes, bleeding disorders community member, 聽has been invited to be a guest and sit in President Obama’s box during the Joint Session address.聽 Click here to read more.聽 To watch the Joint Session online聽tune into C-SPAN. The Wilkes’ story聽was featured on the White House website.聽 Their story illustrates the struggles families with expensive, rare […]

PRESS RELEASE: HFA WELCOMES NEW INTERN Amanda Winchester

September 8, 2009

FOR IMMEDIATE RELEASE: September 8, 2009 Washington, DC – Effective August 24, 2009 the Hemophilia Federation of America (HFA) is pleased to announce the addition of Amanda Winchester, Intern.聽聽 Ms. Winchester’s primary responsibility is Helping Hands Coordinator. Helping Hands is a program for individuals with hemophilia and von Willebrand disease that provides emergent financial relief […]

PRESS RELEASE: HFA AWARDED CDC COOPERATIVE AGREEMENT FOR FIT FACTOR PROGRAM

September 7, 2009

FOR IMMEDIATE RELEASE: September 1, 2009 The Hemophilia Federation of America (HFA), a national nonprofit headquartered in Washington, DC, has been awarded a five-year cooperative agreement from the Centers for Disease Control and Prevention (CDC).聽 The award supports a program aimed at promoting physical activity and maintaining a healthy weight in individuals with hemophilia. 聽Proper […]

PRESS RELEASE: HFA AWARDED CDC COOPERATIVE AGREEMENT FOR BLOOD BROTHERHOOD PROGRAM

September 7, 2009

FOR IMMEDIATE RELEASE: September 1, 2009 The Hemophilia Federation of America (HFA), a national nonprofit headquartered in Washington, DC has been awarded funding for a cooperative agreement from the Centers for Disease Control and Prevention (CDC).聽 The award, totaling $289,000 per year, supports a program aimed at providing social support, health information and skills to […]

President Obama to address Congress September 9

September 4, 2009

On September 2, Speaker of the House Nancy Pelosi and Senate Majority Leader Harry Reid sent a letter to President Obama asking him to address a Joint Session of Congress.聽 On September 9, President Obama has a speech planned to lay out a more detailed health care reform plan before a joint session of Congress.聽 […]

Keeping Blood Transfusions Safe: FDA’s Multi-layered Protections for Donated Blood

September 3, 2009

Vaccines, Blood & Biologics Keeping the United States blood supply the world’s safest is the ultimate responsibility of the nation’s more than 3,000 blood establishments, which collect and process 14 million units of whole blood donated by volunteers each year. The Food and Drug Administration, however, has the vital role of ensuring that the 3.5 […]

Farewell to Harvey as he heads to Hampton University

September 3, 2009

Harvey Gates, Jr. will be missed by the HFA Team.聽 Harvey spent the entire summer as an intern with HFA.聽 As a community member with hemophilia, Harvey realizes the importance of supporting community organizations.聽 Harvey completed multiple projects聽 and expressed enthusiasm while working for HFA this summer.聽 We wish him well as he heads back […]

Ablynx Initiates Phase II Clinical Trial for Alx-0081

September 3, 2009

聽 01 Sep 2009 Ablynx announced the initiation of a Phase II study for its anti-thrombotic Nanobody ALX-0081, a first-in-class Nanobody targeting von Willebrand Factor (vWF)GHENT, BELGIUM | September 1, 2009 | Ablynx [Euronext Brussels: ABLX] today announced the initiation of a Phase II study for its anti-thrombotic Nanobody ALX-0081, a first-in-class Nanobody targeting von […]

What’s gonna happen next?

September 2, 2009

September is here and Congress is back in session next week.聽 There are still many unanswered health reform questions.聽 Last week, the Kaiser Health Network reported on Senator Chuck Grassley’s view of next steps; “If town meetings are going to mean anything, if democracy is going to mean anything, then you listen to your people […]

HFA Launches Students for the Awareness of Bleeding Disorders (SABD) web pages

September 1, 2009

Young leaders are instrumental to the future of the bleeding disorders community.聽 Students and young adults have a VOICE and an important story to tell.聽 Furthermore, they want to be involved and advocate for the bleeding disorders community.聽 In response to those needs, the HFA Team has launched web space on the HFA website to […]

MASS INACTION: Placing the Massachusetts Model and Healthcare debate in a National context

August 31, 2009

In 2004, local community groups placed a constitutional amendment on the ballot creating a right to “healthcare for all.” Massachusetts election law requires constitutional amendments be approved by the voters and the legislature twice in two successive elections. Both the legislature and voters approved the measure in ’04. But in 2006, Governor Romney, at the […]

“Lies, Damned Lies and Statistics”

August 28, 2009

Coal miners use to rely on canaries to let them know when an unhealthy level of gases had built up. The canary would end up meeting an untimely demise, but more often than not, the accompanying miner would end up getting out safely. Over time the idea of the coal miner has become romanticized, complete […]

Remembering Senator Kennedy

August 27, 2009

Senator Edward “Ted” Kennedy, spent 9-terms (40-plus years) in the Senate.聽 He will be laid to rest on Saturday, August 29, 2009 at Arlington National Cemetery.聽 He was one of the most outspoken and effective members of the Senate.聽 He has been a long term proponent of health care reform and has a lengthy record […]

Even with health insurance, Texans in high-risk pool struggle

August 27, 2009

Marshall News Messenger – Marshall,TX,USA Christian Rodriguez, a 22-year-old college student in Spring who has hemophilia, a blood–clotting disorder, expects to reach the $2 million lifetime maximum …

Announcing the formation of a Hemophilia HIV/AIDS National Memorial

August 26, 2009

Announcing the formation of a Hemophilia HIV/AIDS National Memorial Release date: 聽 Immediate聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 contact: 聽 聽聽聽聽聽聽聽聽聽聽聽 MARY LOU MURPHY 聽聽聽聽 781.444.8672 Terry MacNeil 聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 978.937.9857 聽 A national memorial fund has been established to honor those who have lost their lives to Hepatitis C and HIV/AIDS as a result of tainted blood products in the […]

September IS Pain Awareness Month

August 26, 2009

Greetings: September is Pain Awareness Month and the American Pain Foundation invites you to join us in sounding the alarm in communities across the country about the barriers to accessing appropriate and effective pain management and the desperate need for better pain care. This year’s campaign, Conquering Pain Together, includes a first National Day of […]

TAKE A WALK ON THE WILD SIDE WITH GREAT LAKES HEMOPHILIA FOUNDATION

August 25, 2009

TAKE A WALK ON THE WILD SIDE WITH GREAT LAKES HEMOPHILIA FOUNDATION PitchEngine – Riverton,WY,USA Hemophilia affects more than 500 individuals in Wisconsin, while von Willebrand disease affects 1-2% of the population, or roughly 110700 Wisconsin …

Ablynx Will Announce Half-Year Results For 2009 With Webcast

August 25, 2009

Ablynx Will Announce Half-Year Results For 2009 With Webcast PharmaLive.com (press release) – Newtown,PA,USA ALX-0681, a subcutaneous formulation of the novel anti-thrombotic Nanobodies® that also selectively targets von Willebrand factor (vWF) has concluded Phase …

Focus on Data Mining

August 21, 2009

When a patient fills a prescription at a major pharmacy, a record of that prescription (minus the patient name) is sold to companies – so-called health information organizations – that pool information from multiple pharmacies. The bundled information is combined with individual physician identities purchased from the American Medical Association to create prescriber profiles (name, […]

Chutes and Ladders

August 20, 2009

I have an admission. I am not particularly proud of myself, but I got a D- in High School Biology. Normally, I wouldn’t share something this personal in this space, but I do so to illustrate a point. In High School, I couldn’t look at the model of the double helix in class without thinking […]


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