NHF Washington Days - Video Thursday

    

    
     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. 

Insurance Not Making It Affordable!!!

     For the last 7 years I have had it easy being a Prophyholic HemoMom.  My ex-husband had great insurance!  When it was time for Marques (8) to get his port, I didn't think twice about it, getting his factor or at the time having nurses come out to the house....no problem, we paid nothing out of pocket.  I knew not having "good" insurance was a problem for some hemophiliacs like my Dad, so I was grateful for the insurance my ex-husband had. 

     When I had Laithan and Layla (1) with my current husband, he did not have any insurance.  He was working a temp to perm job at the time, so we were hoping he would get hired before I had the twins.  Unfortunately, that didn't happen so I tried applying for Medicaid but was denied.  Laithan's first few hematology appointments I still owe for today....Luckily, Baxter had a free sample program so we were able to get 6 doses of factor free.  I just prayed we wouldn't need them or it would last us until we had insurance.
    
     After some guidance from the Hematologist Clinic Social Worker, I was able to find a program in SC called the Child Rehabilitative Services (CRS).  They provide free blood products and supplies to children with Hemophilia.  When we were approved for that program, I was jumping for joy and proud of myself for researching, driving down to the health office, completing the paperwork and getting approved.  Finally, when the twins were 7 months old my husband was hired permanently and we finally had insurance.  The insurance now paid for the Dr. appointments, but I was still getting the factor through CRS. 
    
     After thinking, "okay I have this all under control!" My ex-husband has decided to move closer, which means that Marques no longer has the "good" insurance.  My ex-husband job has a co-pay for the factor which will cost me about $200 month (so funny, UPS just rung the door bell to deliver it).  Still, I know for some families they pay more than $200 month, but since I am now a stay-at-home Mom I don't know how to stick this $200 in our budget.  However, I do know I can get his factor for free like Laithans.  I will be going down to my County's CRS and adding him onto the application.  I also now have a co-pay of  $65 to see the hematologist verses the $10 and $130 emergency room co-pay verses $50.
    
     Thank you to all the hemophilia health advocates, hemophilia associations and families that fight for these state programs!!  I am now dealing with the true realities of how expensive being a Prophyholic HemoMom really is.