Ethan Vikash is 2 years old. He was born with a genetic “glitch” as his mother calls it, known as heterotaxy. This is a rare birth “glitch” or defect that has affected Ethan’s heart.
Ethan’s mother, Ali Chandra (@aliranger29), posted on Twitter Friday and Saturday about Ethan’s situation, primarily to call attention to how different it would be without the insurance they have. She was posting in response to the released text of the senate’s bill to rewrite the Affordable Care Act.
Broken down, hetero means different and taxy means arrangement, which is a fairly straightforward explanation of the syndrome. Ali writes about “the surgeon who created what we call Ethan’s ‘Picasso heart,’ shaping 4 chambers from the 2 he was born with.”
Her first tweet carried a photo of a hospital bill from Boston Children’s Hospital; she writes: “It seems fitting that, with the #TrumpCare debate raging, I got this bill in the mail today from Ethan’s most recent open heart surgery.” The bill breaks down thousands of dollars worth of procedures, showing how much was covered by their insurance and showing that she owes only $500.
— BuzzFeed News (@BuzzFeedNews) June 24, 2017
Her next post is a screen shot of the recognizable calculator that comes on any iphone. ‘I’ll save you some math,” she writes; “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.”
According to her, this is his fourth of such surgeries and some of them have been “more involved than others. The one before this had him in the CICU for three weeks.”
She goes on to explain that his Picasso surgeon lives states away and that they also have to regularly checkup with a local cardiologist, electrophysiologist (for his pacemaker), pediatrician and immunologist. “The longest he’s ever gone between appointments: 5 weeks.”
In addition to surgeries and doctors’ visits, Ethan must take 5 prescriptions multiple times per day. She then comes out bluntly to say “reinstate lifetime caps and he’s out.”
“A lifetime cap on benefits is the same as saying,’Sorry you’re not worth keeping alive anymore. You’re just too expensive.”’
It is perhaps needless to say that her story has gone viral. It includes beautiful photos of a beautiful little boy with dark hair, dark eyes, and visible scarring on his chest. There’s one with him after a surgery attached to breathing tubes with a plush giraffe nearby and a cheesy grin on his face. They are effective photos, some showing him full of vitality, exploring the outdoors, playing as all children do with sticks and bugs and jumping in puddles. There’s one showing his tiny body wrapped tight in his mother, Ali’s, arms.
She got so many responses she didn’t know what to do with them. She even had to turn down offers for a crowdsourcing fundraiser, saying “Many have asked about a gofundme. Because we have insurance, we don’t need financial help. Just fight to help us keep that coverage.”
Twitter user @jshore216 promoted the Twitter “Moments” thread by saying: “Important thread for those defending the new Healthcare bill.” And @caseyturner said: this thread will break your heart. Let it. then call your senator.”
These are the kinds of stories emerging as the Affordable Healthcare Act is threatened by the Trump administration and the GOP in Congress. Even republican voters who have previously been against socialized healthcare have found that the benefits of access to affordable insurance, or insurance at all, outweigh political ideology.
One woman Thursday was shown talking calmly and articulately about her adult daughter’s struggle with cancer. In the video, the woman speaks to Shelley Moore Capito, showing her pictures of her daughter on her phone, and saying “She’s been fighting this cancer for four years…as sick as she has been she would not be alive today today without the ACA” also referencing lifetime caps that she would have surpassed quickly, rendering her unable to pay for further treatment.
And in February, when the House of Representatives was working on its own version of a replacement bill, a woman at a Tennessee Town Hall for Representative Diane Black, Republican, went viral by stating: “As a Christian, my whole philosophy on life is pull up the unfortunate. So the individual mandate, that’s what it does. The healthy people pull up the sick.”
In response to the Senate bill’s release earlier this week, four republicans were allegedly already speaking out against it, though reportedly because they felt it did not go far enough in repealing Obamacare. Another has joined their ranks, Nevada Republican Dean Heller, prompting a Twitter ad asking constituents to push Heller to vote yes, #HellerVoteYes; that, in turn prompted a viral response hashtag, #HellerVoteNo, with even celebrities like Alyssa Milano tweeting to encourage him to maintain opposition to the bill.
Majority leader Mitch McConnell can only afford to lose two votes and still pass the bill the way he wants to. The Congressional Budget Office is reportedly going to release its score of the bill as early as Monday, with McConnell pushing for a vote by next Thursday.
In addition to heartwarming stories like Ethan’s, some of the best responses to the historically unpopular legislation are succinct and even comedic. Senate Minority Leader Chuck Schumer has reportedly been walking around the capitol all week with a red poster board that says “Mean,” quoting President Donald Trump, who allegedly called the House healthcare bill mean in a private conversation. When the Senate’s bill was released, Schumer took a permanent marker and added an “E-R” to the poster, changing it to “Meaner,” and sending a very clear message.
The CBO score for the House bill estimated that 23 million Americans would lose insurance or access to healthcare if the bill were passed. Analysts believe that number would stay pretty much the same, although the Senate has gone further in breaking Donald’s Trump promise to protect Medicaid and may, therefore, be putting even more people at risk.
When asked how Ethan was taking his new viral fame, Ali responded: “Ethan has no idea that he’s gone viral; he’s probably just happy that this virus hasn’t resulted in an ER trip and a sepsis workup like so many of his past sicknesses,” with an Emoji that indicates one is laughing so hard they’re crying. She also reported that Ethan will turn 3 in exactly one week, on July 1st. Happy birthday Ethan, we’re glad you get to celebrate another year!