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Me, our daughter Mirabella (3), my husband Jeff, and our son Zeke (1).

Nadia's picture
Below is the story submitted by PA MomsRising member Devalina 
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.  
Our son Zeke, was born with a chronic illness called Hemophilia last March. Mostly, he is like all other 16-month olds, he likes to crawl around with his toy cars, to smile and wave at people, and to dump most of his food on the ground. But unlike most 16-month olds, his Hemophilia makes it difficult for his blood to clot because his body does not produce enough Factor VIII, the protein that most people have in their bodies naturally. When Zeke bleeds, we have to inject a synthetic form of Factor VIII, which costs around $5,000. We have to have 2 doses of this medicine in our fridge at all times in case of an emergency. As you can clearly see, Hemophilia is an expensive condition to treat. As Zeke gets older and grows and gains weight, we will need even more Factor VIII to treat bleeding episodes. 
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. ​
Zeke receiving his Factor treatment at the Children's Hospital of Philadelphia (March 2017).
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!


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