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News & Perspectives

Nathan Wilkes introduces President OBAMA at town hall meeting

August 15, 2009

Nathan Wilkes, a bleeding disorders community member,  had the opportunity to introduce President OBAMA today at a townhall meeting in Grand Junction, CO.  Before the introduction, he highlighted how his 6-year old son with hemophilia nearly reached the lifetime insurance cap.  He emphasized his family’s concerns with health insurance coverage.  HFA is excited Nathan had the opportunity to represent the […]

HFA applauds Paterson, NY legislature effort to address the coverage needs of dependent children

August 12, 2009

Last week, New York Gov. David A. Paterson has signed into law a series of health reform efforts, including: extending coverage to those who are uninsured and 29 or younger and increasing the age of a dependent to 29. In signing the bills, Paterson said “the reforms will make health insurance more affordable for New […]

Town hall meeting frenzy

August 7, 2009

Town hall meetings across the United States have gotten out of control.  Fights, yelling, tombstones with names of Congress members, and vulgar posters are the norm.  Members of Congress are in fear of their lives.  Some have opted for “tele-town hall meetings” instead. What happened to civil meetings with dialogue between Congress members and their […]

The Health and Human Services Secretary discusses health insurance reform on 8-7-09

August 6, 2009

HHS Secretary Kathleen Sebelius and top HHS officials plan to discuss reform of the health insurance system Friday at 1pm.  To watch the webcast, click here.

News Release

August 6, 2009

August 6, 2009 (Cincinnati, Ohio)   BioRx, a specialty pharmacy, and Hemophilia of North Carolina, a non-profit organization whose goal is to assist, involve and educate persons affected by bleeding disorders, announce the winners of the 2009 BioRx Educational Scholarships.  Each of the winners receives a $2,000 scholarship.  The scholarships are funded by BioRx through an […]

For Immediate Release: July 29, 2009

August 6, 2009

Contact: CDC Division of Media Relations (404) 639-3286 CDC Advisors Make Recommendations for Use of Vaccine Against Novel H1N1 The Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices (ACIP) met today to make recommendations for use of vaccine against novel influenza A (H1N1).  The committee met to develop recommendations on who should […]

Why is Health Information Technology emerging as a state issue?

August 6, 2009

Much of the action on health care continues to occur at state and local levels, with support from the federal government and national and local philanthropies. Many states begin by forming a commission to develop an action plan for HIT and, most significantly, bring together the various interested parties. Since 2005, almost one-third (17) of […]

Plasma Users Coalition (PUC) Develops Health Care Reform Principles

August 6, 2009

Several national patient organizations representing the Alpha-1 antitipsin, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Guillain-Barre, hemophilia, platelet disorders, primary immunodeficiency diseases and other rare disease communities have formed a group to address the unique needs of users of “plasma protein therapies” (plasma derived and recombinant therapies). To address the uniqueness of PUC’s membership, the group developed […]

Congratulations to the Pennsylvania Bleeding Disorders Community

August 5, 2009

This afternoon, the Hemophilia Standards of Care Act passed in the Pennsylvania House of Representatives by a vote of 197-0.The bipartisan nature of this vote underlies the import of this legislation. In winning on the floor, the community withstood enormous pressure from Pennsylvania Insurance lobby and the business community. The legislation now moves on to […]

It’s all about the kids…

August 3, 2009

If you have found your way to this blog, you might consider yourself web savvy. Phrases like digital divide and things like tweeting may even be second nature to you. But if you have teenagers in your home, you are always playing catch up. Cyberspace is their playground. You and I know that. Your kids know […]

About Advisory Committees…

August 1, 2009

Last week, Ohio Governor Ted Strickland vetoed the formation of a new Hemophilia Advisory Committee saying that one existed as a matter of Ohio law and had been dormant for years, and as such the new measure was redundant. In Georgia, Governor Roy Barnes delivered a veto this month to a measure that would have created […]

Have you called your member of Congress? Call during the August recess!

July 30, 2009

There is an urgent need for consumers to reach out to their member of Congress! Healthcare reform is happening now.  It is more important than ever that you reach out to your members of Congress now.  The National Health Council and Families USA have provided consumers with toll-free numbers to reach their member of Congress.  […]

Have you actually read H.R. 3200?

July 29, 2009

Yesterday I received an email from a member of the bleeding disorders community.  The email began with “this is NOT a health care plan but a system to further invade your life/privacy, take your money, ration health care, control salaries of medical professionals and prescribe your death plan”.  The email highlighted sections of America’s Affordable Health […]

Notes from Philadelphia…

July 29, 2009

I had the distinct honor of representing HFA at the National Conference of State Legislators 2009 Summit in Philadelphia last week. The National Conference of State Legislatures is a bipartisan organization that serves the legislators and staffs of the nation’s 50 states, its commonwealths and territories. For five days, 5,000 state legislators and another 5,000 staff people […]

Healthcare Federalism

July 29, 2009

Watching the goings on in Congress around the various healthcare proposals, one might think that the day after Congress passes a reform package we all will immediately have insurance coverage. A quick primer in legislative process might come in handy here. Congress is charged with creating the rules. This is going on now. The various […]

Bayer HealthCare Launches Hemophilia Self-Infusion Training Program

July 28, 2009

News Release   Innovative BayCuff™ Program Empowers Young Members of Hemophilia A Community to Take Control of Their Treatment WAYNE, NJ, July 9, 2009 – Today, Bayer HealthCare Pharmaceuticals launched the BayCuff™ self-infusion training program, an educational initiative designed to make infusion of recombinant factor VIII easier for both patients with hemophilia A and for their […]

FDA Update: U.S. Department of Health and Human Services

July 28, 2009

Guidance for Industry: Nucleic Acid Testing (NAT) to Reduce the Possible Risk of Parvovirus B19 Transmission by Plasma-Derived Products: http://www.fda.gov/BiologicsBloodVaccines/GuidanceComplianceRegulatoryInformation/Guidances/default.htm

Kimberly’s “wild” town-hall meeting with Rep. Sensenbrenner

July 27, 2009

“Obama’s health plan will make the current situation worse”.  Rep. Sensenbrenner’s declaration set the tone for a “very charged up” crowd at recent town-hall meeting attended by HFA’s very own Executive Director, Kimberly Haugstad.  Many attendees in the standing room only meeting expressed significant frustration with the member who represents Wisconsin’s 5th-district.  Obama supporters expressed […]

Check to see how the House Tri-Committee health reform bill will impact where you live

July 27, 2009

The House Energy and Commerce Committee analyzed the impact that America’s Affordable Health Choices Act of 2009 (H.R. 3200) would have on each member’s district.  To learn more about the impact of the legislation on small businesses, seniors in Medicare, health care providers, and the uninsured, please click DISTRICT-BY-DISTRICT IMPACT.

Von Willebrand Test

July 27, 2009

Google Web Alert for: von Willibrand Von Willebrand Test Tests may need to be done more than once because these levels may rise and fall over time in an individual The most common treatment for von Willebrand …

What should be the deadline?

July 24, 2009

In a press conference earlier this week, President Obama said “if there is not a deadline in Washington, nothing happens”.  Seven members of the Blue Dog Coalition expressed concerns over the cost and the need to pass “deficit neutral” health reform legislation.  Representative Mike Ross, Chairman of the Blue Dog Health Care Task Force feels […]

Press Release: HFA Adds Voices Campaign Project Coordinator to National Team

July 24, 2009

FOR IMMEDIATE RELEASE:                                                                         July 23, 2009 HFA Adds Voices Campaign Project Coordinator to National Team Washington, DC – Effective July 6, 2009 the Hemophilia Federation of America (HFA) is pleased to announce the addition of Ms. Katie Whittle from Seattle, Washington as its Voices Campaign Coordinator.  “We are delighted to have Katie on board.  Her […]

Press Release: CSL Behring Awards Multi-year Commitment to the HFA Voices Campaign

July 23, 2009

July 22, 2009      CSL Behring Awards Multi-year Commitment to the HFA Voices Campaign Washington, D.C. – The Hemophilia Federation of America was recently awarded a multi-year commitment to its Voices Campaign.  The HFA launched the program in May of 2009 at its annual meeting in Indianapolis, IN and has continued to build positive momentum […]

Health care reform made simple

July 23, 2009

The Kaiser Family Foundation has put together a great tool to help decipher and compare the health care reform bills.  If you don’t have time to read thousands of pages of documents filled with legislative language, this tool provides easy-to-read summaries of sections within the bills.  It allows you to compare the most popular reform […]

Harry and Louise are back again

July 21, 2009

Same couple, different year…Harry and Louise are back on the advertisement campaign scene advocating from a different side.  The couple is known for advertisements launched against President Clinton’s health care plan in the 1990’s. On July 16, 2009 the couple was featured in an advertisement in support of reforming the health care system.  This time […]

Leaders lead

July 20, 2009

The world is filled with all kinds of leaders. There are those amongst us who yell, scream, cajole, and carry on in an effort to get folks to act. But there is another kind of leader, a person who goes about their work seeking little attention, motivated simply by that which is right or just. […]

Plasma Protein Therapeutics Association Supports Patient-Centered …

July 20, 2009

Google News Alert for: von Willibrand Plasma Protein Therapeutics Association Supports Patient-Centered … SYS-CON Media – Montvale,NJ,USA … such as alpha-1 antitrypsin deficiency, bleeding disorders such as hemophilia and von Willebrand disease and primary immune deficiency diseases. …

Google News Alert for: von Willibrand

July 20, 2009

Google News Alert for: von Willibrand Bio/Data Corporation Launches vW Select(TM) – The World’s First … SYS-CON Media – Montvale,NJ,USA vW Select is the first and only complete assay that measures the functional activity of the von Willebrand Factor. A deficiency of von Willebrand Factor …

Wyeth Pharmaceuticals, Catalyst collaborating on hemophilia drug

July 20, 2009

Tuesday, June 30, 2009, 11:36am EDT Wyeth Pharmaceuticals, Catalyst collaborating on hemophilia drug Philadelphia Business Journal Wyeth Pharmaceuticals said Tuesday that it has formed an exclusive worldwide collaboration with Catalyst Biosciences Inc. to develop treatments for hemophilia and other bleeding conditions. Collegeville, Pa.-based Wyeth Pharmaceuticals, a division of Wyeth (NYSE:WYE) said it will pay South […]

“Rosa sat so Martin could march, and Martin marched so Barack could run…”

July 17, 2009

As I was sitting in the lounge at National Airport in DC, I was going through old e-mails. I found one, with the title above, as the subject. It came from an old college friend. The e-mail’s point was an important one. We as people are impatient by our very nature. Change is evolutionary. American […]


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