Jack

Age 9, Virginia

Meet Jack. Jack is funny, very creative, and an incredible big brother to three younger siblings. He loves to draw and sing, and is an amazing gamer (his favorites games are Fortnite, Among Us, and Roblox). Jack swims on his neighborhood swim team, belongs to his church cub scout pack, and takes great pride in being a Little Lobbyists Ambassador. Jack also has Cystic Fibrosis, Allergic Broncho Pulmonary Aspergillosis, Distal Intestinal Obstructive Syndrome, Exocrine Pancreatic Insufficiency, and Convergence Disorder.

Jack’s mom Tasha says: “The return of pre-existing conditions is the most terrifying aspect for me – my son has had a pre-existing condition since 4 weeks of age. He already cannot get life insurance; prior to the elimination of pre-existing conditions our options for healthcare were so much more limited. Why should an insurer be allowed to tell a child who was born with a condition that they are too much of a risk to insure? Neither I nor my son chose this for him; my government should be doing everything in its power to help me save him and children like him. They are important, their lives matter. They need to be given every opportunity to thrive and participate in every moment of their life just as healthy people do.

Jack was born prior to the ACA, he became sick and I had to take time off work. I had to take so much time off, we faced losing my job which provided our insurance. We couldn't afford COBRA. The likelihood I could get another job and re-insured was unlikely. We were lucky, my employer allowed me to work from home. If they had not Jack would probably not be alive today. Just his medications at that time cost $7,200 per month which did not include his clinic visits or other necessary therapies. Today, his medications average $400,000 per year. To keep my son alive, without insurance would cost me for medication ALONE, almost a half a million dollars per year. Even with insurance, without the ACA he hits the Lifetime cap in 2-4 short years. He will be 10.”

Submitted by Tasha, Jack’s mother