I'd like to share a personal story of how the new proposed Senate Bill (BCRA) would directly affect my family and hurt others in the Bleeding Disorders Community.  

A couple of months ago around Zeke’s 1st birthday, when he was learning to walk he had a simple fall where an emerging tooth hit his gum and led to profuse bleeding from the mouth. For a normal child this would have been a minor issue and the bleeding would have stopped after a couple of minutes. But for kids like Zeke who have Hemophilia and other blood disorders, his mouth cut never fully clotted and kept opening up (by eating, drinking from a bottle, or even smiling). The evening after Zeke’s fall, we cleaned him up, checked the mouth area and put him to bed. When we went into his room the next morning he was laying in his crib covered in blood. It was all over his body, sheets, face and hair. We wondered if he was even conscious. We hope no other parent has to go through what we went through. Once we Zeke to the hospital they said his iron and hemoglobin dropped because he was slowly bleeding all night. The medicine finally helped his bleeding to stop and a couple days later he was back to normal. Without the Advate (paid for through Medicaid), who knows what would have happened. ​

 

 

My husband Jeff and I both work full time. I am a schoolteacher and he is a product manager for a technology company. We pay our taxes. We save for our children’s every basic necessity (like food and clothes) and every dream (like college and music lessons). We put our kids in car seats when we drive and in helmets when we bike. We are involved in our neighborhood civic associations and school. We exercise and eat kale. We VOTE. We are responsible people. There is NO WAY without Medicaid that we could afford our son’s medicine on our salaries combined. And this is just with “moderate” Hemophilia. In many families with children with “severe” Hemophilia, they need Factor more often and one parent has to stay home while the child is young to give Factor VIII prophylactically on a weekly basis.  

 

This proposed bill will reduce coverage, increase costs, and put at risk thousands of those like Zeke with bleeding disorders that rely on Medicaid by blocking grants and caps. I think that no matter what your politics are, this is not the solution! I ask that Senators please think about kids like Zeke as they are making their decision. Vote NO on BCRA!