HSC Educational Symposium and Family Weekend Review

     Let me just start of by saying I had a good weekend!  The weather was foggy Saturday, which was okay since we were in meetings all day, but Sunday morning made up for it.

     My family has made a commitment to attend this meeting every year so we can "check in" with the Hemophilia community.  This year, I have to say it was a good check up.

     This year theme was "Today and Beyond".  The Weekend Agenda was full of education sessions for parents as well as the children followed by a Holiday Buffet Dinner and Christmas Celebration.  There were several good sessions that I will break up into a few blog post.

     One of Saturday Morning sessions presented by Michelle Rice, Director of Public Policy of NHF who is responsible for coordinating NHF advocacy efforts at the state and federal levels, provided everyone with a Personal Health Care Insurance Toolkit created by NHF to help you decide which insurance plan is best for your family.  Of course it's the end of the year and time for insurance changes.  My husband always just picks the one that seems to be the best choice to take care of our hemophilia needs.    The toolkit walks you through a worksheet you complete based on information from your own insurance plan.  You can compare dollar for dollar which plan is best for you.  I'm almost scared to check to make sure we did pick the right plan. 

    
     If you were following me on Twitter this weekend at @Prophyholic, you know I had an enlightened moment about the importance of supporting your Chapter, which came up during this session.  Now, don't get me wrong.  I knew it was important to join a Chapter, but I did not understand the correlation between being involved and showing up to events with how much funding your Chapter can receive from drug manufactures and insurance companies to donate to the Chapter.  I guess my ignorance came from always seeing pharmacy providers at events when I attended with my Father and just thought they were part of the package.  Back then, pharmacy providers paid for trips, provided helmets and everything else to keep you as a customer. 
    

     Now, with the Medical and Scientific Advisory Council (MASAC)  Document #188  (there are alot of documents covering alot of subjects) standards of what pharmacy providers can provide to patients with bleeding disabilities.  This standard has made it illegal for pharmacy providers and insurance companies to offer consumers anything worth more than $10 per item and $50 per patient.  However, they are able to provide and sponsor a Chapter event,  then the Chapter can use these resources to help their members.  So lesson learned to share is STAY INVOLVED WITH CHAPTER AND ATTEND EVENTS.
 
     So, how did I do on my goals for this weekend?!...Not too good!  I did not make any connections offline.  I did talk again to a family that lives close, but we did not exchange info.  Goal two was to share best practices.  They didn't have any open forum time, so I never had a chance for this type of discussion.  I did however accomplish Goal three of having a great time.  Only Laithan sat on Santa's lap....Layla wouldn't even stand near his lap...

 

I also made Marques sit on Santa's lap....he doesn't believe in Santa anymore...but this is a great blackmail picture!

    

 

 

     Over the next few weeks I will do a post on a few more things that came up durning they Symposium.   I really would like to thank all the board members of the South Carolina Hemophilia Association for organizing such a great informational weekend. I can tell they put in a lot of work without a lot of help. I did sign up to join a committee next year, so maybe I can help organize next year's event.

     

 

     Do you belong to your State's Hemophilia Chapter?  If not, why not?  Did you go to the end of year party or event?