Advocacy News

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 […]

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 […]

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 […]

Community Members Nathan & Sonji Wilkes, live on MSNBC

August 20, 2009

Check聽out the video of community members Nathan and Sonji Wilkes, interviewed聽by聽Dr. 聽Nancy on MSNBC today!

Why Palliative Care matters…

August 18, 2009

In 2008, New York took an active approach to increasing the use of palliative care by educating health care professionals about this form of care and its potential benefits passing Senate Bill 2108. SB 2108 provided $4.5 million in grants from the state’s public health budget to recruit faculty for and develop programs in health […]

Read Nathan Wilkes’ remarks from Grand Junction, CO town hall meeting

August 17, 2009

Nathan Wilkes and his family have truly inspired聽the community to share their stories and let their VOICES be heard.聽 To read聽Nathan’s entire introduction on August 15, 2009聽CLICK HERE.

Nathan Wilkes introduces President OBAMA at town hall meeting

August 15, 2009

Nathan Wilkes, a bleeding disorders community member, 聽had the opportunity to introduce President OBAMA today at a townhall meeting in Grand Junction, CO.聽 Before the introduction, he聽highlighted how his 6-year old son with hemophilia nearly reached the lifetime insurance cap.聽 He聽emphasized his family’s concerns with聽health insurance coverage.聽聽HFA is excited Nathan had the opportunity to聽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.聽 Fights, yelling, tombstones with names of Congress members, and vulgar posters are the norm.聽 Members of Congress are in fear of their lives.聽 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.聽 To watch the webcast, click here.

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聽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聽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.聽 It is more important than ever that you reach out to your members of Congress now.聽 The National Health Council and Families USA have provided consumers with toll-free numbers to reach their member of Congress.聽 […]

Have you actually read H.R. 3200?

July 29, 2009

Yesterday I received an email from a member of the bleeding disorders community.聽 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聽and prescribe your death plan”. 聽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.聽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.聽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 […]

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

July 27, 2009

“Obama’s health plan will make the current situation worse”.聽 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.聽 Many attendees in the standing room only meeting expressed significant frustration with the member who represents Wisconsin’s 5th-district.聽 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.聽 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.

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”.聽 Seven members of the Blue Dog Coalition expressed concerns over the cost and the need to pass “deficit neutral” health reform legislation.聽 Representative Mike Ross, Chairman of the Blue Dog Health Care Task Force feels […]

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.聽 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.聽 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.聽 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.聽 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. […]

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