The National Hemophilia Foundation annual Washington Days is planned for Wednesday, February 27 - March 1 to continue to advocate for the bleeding disorder community. I've never attended Washington Days and wanted to this year, but financially I can't. However, I am going to participate for the first time in my local chapter State advocacy day next month! I'm registering for that today and will take my oldest son Marques, so he can begin to understand what goes into him having access to medicine.
Obama's health reform has really put our community in a better position with insurance companies to continue to provide our son's with a "normal" life. I watched a hemophilia video before that reported that it could cost as much as $10,000,000 for a lifetime of factor since hemophiliacs are living longer and need to take factor at least 3x per week! Hence the term, "Million Dollar Babies", my Dad would use. I know insurance companies will continue to fight that and Medicare will not want to keep covering that cost in their budget.
The hemophilia community has had so many advances in the last 40 years. It was a dream to my father that his Grandsons would not suffer from hemophilia the way he did. No one is giving them a shorter life expectancy (except for life insurance companies...need to look into that again). Now that my father dream is reality (besides a cure) and our children can live a "normal" life pain free with proper care, insurance companies/government believe we are no longer in need, because people are not dieing from hemophilia...but, no one is keeping track of the deaths that are avoided because we are better able to provide expensive factor to our sons because of the available programs. Washington Days will continue to impact the legislative process.
My video this week is Obama 2012 Health Reform 2 year anniversary video. One of the families featured has hemophilia and how the reform has changed their family.
Whitehouse Online videos - You Tube
Are you attending Washionton Day or attending your local chapter advocacy day?
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