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News & Perspectives

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 […]

Senate HELP Committee approves health reform legislation

July 15, 2009

On July 15, 2009, the Senate Health, Education, Labor and Pensions (HELP) Committee approved the Affordable Health Choices Act with a party-line vote of 13-10.  The legislation (in conjunction with the yet to be released Senate Finance legislation) will eventually move to the floor for debate.  Please click here to read a thorough press release […]

America’s Affordable Health Choices Act of 2009

July 15, 2009

On July 14, 2009 The House Tri-Committee’s introduced H.R. 3200, a 1018-page bill, nearly 200-pages more than the draft proposal released several weeks ago.   To read the bill or a summary, please visit the Committee on Ways and Means , Committee on Education and Labor, or Committee on Energy and Commerce websites.  Committees will begin […]

PA Standards of Care bill advancing

July 10, 2009

Last week, the Pennsylvania House of Representatives’ Insurance Committee passed HB 620, The Hemophilia Standards of Care unanimously and without amendments. It is likely that the full House will consider the bill within the next several days.   As a national community it is incumbent that we continue to support the efforts of the local Bleeding […]

Senator Chuck Grassley tells town hall meeting attendee “go work for the federal government” for affordable insurance

July 7, 2009

During a town hall meeting, Senator Chuck Grassley (R-IA), ranking member of the Senate Finance Committee and member of the Senate Budget Committee tells an attendee to “go work for the federal government” to obtain health insurance similar to what members of Congress have.  The attendee questioned why the Senator’s insurance was cheaper and better […]

What’s your question?

June 29, 2009

Obama wants to hear from you.  On Wednesday (July 1), Obama will answer questions submitted by people across the nation.  Do you have a question about health care reform?  Please submit your question (video, Facebook, Twitter, etc.) to the following link: http://www.whitehouse.gov/blog/A-National-Discussion-on-Health-Care-Reform/ KC

Congress wants to hear from you!

June 26, 2009

Congress breaks for recess beginning Monday, June 29 thru Friday, July 3 2009.  They are back in their home stated during this time.  It’s important that Congress hears from consumers.  The consumer perspective matters during such an important debate.  Decisions on reforming the health care system are happening now.  Please see the the Friday Update, dated June 26, 2009 […]

Share Your Voice

June 26, 2009

Share your voice with legislators

Share Your Voice

June 26, 2009

The Voices Campaign is HFA’s grassroots advocacy initiative aimed at raising general public and legislator awareness of the bleeding disorders community through personal stories from affected individuals and their families.  In the approaching national debates regarding health care reform, HFA wants to ensure the bleeding disorders community is heard, and through the Voices Campaign, members […]

Press Release: HFA Voices Campaign Gaining Momentum

June 25, 2009

June 25, 2009 Washington DC: Hemophilia Federation of America’s (HFA) grassroots “Voices Campaign” recently launched at the 2009 Educational Symposium in Indianapolis, IN is gaining momentum by collecting powerful stories from community members. “Now is the time for action.  As individuals and as a community, we must be accountable and make every effort to get […]

They Need to Hear From Us: Destiny

June 23, 2009

I learned that legislators do want to hear from me.

House Tri-Committees release a health care reform proposal

June 19, 2009

Today, the House Ways and Means, Energy and Commerce, and Education and Labor Committees’ released an 850-page health care reform proposal.  To read a summary, please visit the House Committee on Ways and Means website.

Gulliver’s Redux

June 14, 2009

Serving the bleeding disorders community as HFA’s Director of Public Policy for State Affairs means spending timing far flung corners of this country. It is an honor to come to your hometown and help actualize a grassroots political agenda that will serve the needs of the community.

Some days however; present greater challenges than others.

North Carolinians mount Raleigh effort for restored community supports

June 9, 2009

HNC mounted it second annual lobby day bring together several dozen consumers from across North Carolina to press lawmakers on several counts. Amongst the concerns presented by community members were recent changes

Healthcare Reform Happenings

May 31, 2009

Working through August recess is probably not appealing to our policy-makers. A few Republican Senators have jumped on the “let’s introduce healthcare reform legislation before June” bandwagon. Senators Tom Coburn, MD (R-OK) and Richard Burr (R-NC) and Congressman Paul Ryan (R-WI) and Devin Nunes (R-CA) have introduced health care reform legislation. The Patients’ Choice Act […]

HFA Road Show

May 27, 2009

The last couple of weeks have been exceptionally busy, I have found myself very much in a New York State of Mind. Special Kudos to Bob Fox, CEO and President of the Mary Gooley Hemophilia Treatment Center (Rochester, NY). Bob also serves as the New York Council on Bleeding Disorders, Bob took the point in […]


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