It’s like saying, “Sorry, you’re not worth keeping alive anymore.”
Under new bills praised by President Donald Trump, 22 million people potentially would lose their health care coverage.
Before the Affordable Care Act, or Obamacare, 91 million Americans were enrolled in health insurance plans with lifetime caps. Once patients with these caps exceed their lifetime or annual minimums — usually set at $1 million to $2 million dollars — their coverage would end. Chronically ill people who lost coverage were forced to pay extremely high bills out of pocket, go bankrupt, or deny themselves treatment altogether.
The current version of the Republican-backed Better Care Reconciliation Act, or Trumpcare, would pave the way for insurers to once again set up these caps.
Twitter user Ali Chandra’s 2-year-old son, Ethan, has a condition known as heterotaxy syndrome that causes the malformation and misplacement of internal organs. Ethan has already endured four open-chest surgeries and will likely have more to come. To show how lifetime caps affect families, Chandra shared a recent medical bill which, due to the Obamacare’s ban on lifetime caps, only cost her $500.
\nIt seems fitting that, with the #TrumpCare debate raging, I got this bill in the mail today from Ethan's most recent open heart surgery. pic.twitter.com/pyUE2UxbWW
— Ali (@aliranger29) June 24, 2017\n
“If this bill is passed, it will depend on how New Jersey government reacts in terms of safeguarding families like ours,” Chandra told BuzzFeed. “Worst case scenario, Ethan will lose coverage or his coverage will become unaffordable — which is the same thing. If lifetime caps are reinstated, we simply won’t be able to afford the out-of-pocket costs without insurance. We would have to choose between his life and bankruptcy.”
Chandra went on to explain the financial pain and heartache that comes with having a chronically ill child.
\nI'll save you some math; without insurance we would owe $231,115 for 10 hours in the OR, 1 week in the CICU and 1 week on the cardiac floor. pic.twitter.com/CQ9OjOsFX8
— Ali (@aliranger29) June 24, 2017\n
\nHe's had four of these surgeries, some more involved than others. The one before this had him in the CICU for three weeks.
— Ali (@aliranger29) June 24, 2017\n
\nWe're hopeful that going forwards he'll need fewer and smaller surgeries, but this was not the last time they'll open his chest.
— Ali (@aliranger29) June 24, 2017\n
\nThe surgeon who created what we call Ethan's "Picasso heart," shaping 4 chambers from the 2 he was born with, is several states away.
— Ali (@aliranger29) June 24, 2017\n
\nWe also regularly see a local cardiologist, and electrophysiologist for his pacemaker, a pediatrician, & immunology for his polysplenia.
— Ali (@aliranger29) June 24, 2017\n
\nWe're going to be adding pulmonology to his team after we give him a summer break. The longest he's ever gone between appointments: 5 weeks.
— Ali (@aliranger29) June 24, 2017\n
\nHe takes 5 different prescription medications multiple times a day. All of this adds up. None of this would be possible without insurance.
— Ali (@aliranger29) June 24, 2017\n
\nAnd I want you to go look at that number again. Nearly a quarter million dollars for one surgery. Reinstate lifetime caps and he's out.
— Ali (@aliranger29) June 24, 2017\n
\nHe blew past the million dollar mark long ago; I haven't even mentioned the ER trips for sepsis workups every time his temp goes above 100.4
— Ali (@aliranger29) June 24, 2017\n
\nOr the surprise admissions that sometimes follow those ER visits when his body just isn't strong enough to fight a common virus at home.
— Ali (@aliranger29) June 24, 2017\n
\nAs long as we have him with us (and I hope with everything in me that it's forever) we will need to pay for expensive medical care.
— Ali (@aliranger29) June 24, 2017\n
\nA lifetime cap on benefits is the same as saying, "Sorry, you're not worth keeping alive anymore. You're just too expensive."
— Ali (@aliranger29) June 24, 2017\n
\nTell that to the boy who just tucked a sick firefly into bed with a leaf blanket and told me to keep the light on so he wouldn't be scared. pic.twitter.com/SAwsdHISPi
— Ali (@aliranger29) June 24, 2017\n
\nTell that to the boy who picks me bouquets of sticks instead of flowers because he loves them better so he's sure I will too. pic.twitter.com/Zu987SCGTK
— Ali (@aliranger29) June 24, 2017\n
\nTell that to the boy who wraps his warm arms around my neck and snuggles close after a nap. pic.twitter.com/zznY4S7QtM
— Ali (@aliranger29) June 24, 2017\n
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