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Advocacy News

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 […]

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. […]

PA Standards of Care Bill Advances

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聽within the next several days. As a national community, it is incumbent that we continue to support the efforts of the local Bleeding Disorders […]

One is the Loneliest Number

May 20, 2009

As the fiscal year for the states winds down, we find 48 of the 50 states running budget deficits. Sole-sourcing continues to be an attractive way for state government to drive down its costs with respect to specialty pharmacy. Sole sourcing, sometimes called single-sourcing, is the idea that by reducing the number of vendors selling […]

New Yorkers on the Watch Against Tier IV

May 7, 2009

New York State Senators Tom Duane and Andrew Valesky have partnered to prohibit insurance carriers from charging an extra surcharge on co-pays for the most expensive medications and treatments, like factor concentrate. The bill which is still being reviewed at the committee level instructs the New York State Commissioner of Insurance

Real People Denied Real Healthcare by Nathan Wilkes

May 1, 2009

Thomas Wilkes was born with severe hemophilia


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