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Why Palliative Care matters…

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

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

Nathan Wilkes introduces President OBAMA at town hall meeting

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

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

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

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.

Why is Health Information Technology emerging as a state issue?

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

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

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…

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 […]

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Assisting and Advocating for the Bleeding Disorders Community