2019 Kentucky Bleeding Disorders Advocacy Day at our Capitol in Frankfort was attended by two local Clay County advocates, April Smith and Billie Baker. These ladies joined others from the Kentucky Hemophilia Foundation (KHF) and the Tri-State Bleeding Disorder Foundation to meet with legislators seeking support for two bills, SB-54 and HB-374. SB-54 sets forth prior authorization reform, and HB-374 addresses the accumulator expense issue. After meeting with the legislators, the team then attended a presentation by NORD (National Organization for Rare Disorders) in the Capitol Rotunda, where Senator Julie Adams presented Ursela Kamala from KHF with a proclamation signed by Governor Bevin in recognition of the month of March as Bleeding Disorders Awareness month.
Ms. Smith and Mrs. Baker were both thankful for the opportunity to join the team in advocating for the bleeding disorders community. Ms. Smith’s two sons both have severe Hemophilia A, a rare inheritable blood disorder. They are missing an essential clotting protein, which can cause them to have spontaneous bleeding in their joints, muscles, and organs.
Ms. Smith and Mrs. Baker met with Senate President Robert Stivers and Senator Julian Carroll to share the issues that Ms. Smith’s children, Bradley and Samuel, face daily living with Hemophilia. They also discussed how important it is that the bleeding disorders community has their support regarding the bills in question.
If you are interested in learning more about Hemophilia, or if you would like to support the efforts by our Kentucky Hemophilia Foundation to raise awareness and help support our families in Kentucky affected by bleeding disorders, please call (502) 456-3233 or 1-800-582-CURE (2873), send email to firstname.lastname@example.org, or click on www.kyhemo.org.