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.