Winning Spirit Newsletter Winter 2010

WE HAVE NEVER NEEDED EACH OTHER MORE THAN WE DO NOW!

By Chris Marozzi

We have never needed each other more than we do now! That is the feeling running through the minds of Pennsylvania families affected by bleeding disorders as we wait for the state Senate to consider HB 620, The Hemophilia Standards of Care Act.

There were both cheers and tears as HB 620 passed unanimously (197-0) in the PA House of Representatives on August 5, 2009. Why? Because it was the culmination of years of grassroots hard work. Years ago, parents of children with hemophilia faced insurmountable odds just to ensure their children’s survival. Today we as parents don’t worry as much about our children’s survival, thanks to the advocacy of these early pioneer parents, but we worry about maintaining access to needed medicines and services that allow us to lead healthy, fulfilling lives. HB 620 is a medical standard of care which outlines what we must have for life.

HB 620 provides the protection that our children with bleeding disorders need and studies have shown that if we can maintain access to quality healthcare, the cost of our care and complications actually go down. We MUST work together to ensure this critical legislation gets passed in the PA Senate. And each of us must do our part to make that happen!

We can’t be silent victims. What can we do?? Ask 5 to take 5! Please contact your Pennsylvania State Senator and ask for his/her support of HB 620 AND ask 5 family members and friends to take 5 minutes to do the same. The DVC will provide specific talking points for your visit. ASK 5 TO TAKE 5!! Please help!

Call the DVC Office 215-885-6500 for help or questions Or e-mail to: www.hemophilia@navpoint.com

ASK 5 TO TAKE 5!