Alison Chandra was so worried about what could happen to her son under Republican health-care legislation making its way through the Senate that she thought a little sticker shock would help lawmakers listen to her concerns.
So, in June, the Middlesex County, N.J., mother shared a photo of the bill she received from Boston Children’s Hospital for the cost of treating son Ethan’s rare genetic disorder. The bill, which itemized expenses totaling $231,115, of which Chandra was asked to pay $500, quickly went viral.
— Ali (@aliranger29) June 24, 2017
Chandra said Ethan’s prenatal care and first two surgeries were covered by Medicaid. After that, they were able to switch onto her husband’s insurance, which he gets through his employer.
Ethan, now 3, was diagnosed with heterotaxy, a rare birth defect that, among other ailments, left him with two left lungs and a stomach on the wrong side of his body.
In an essay written for Vox, Chandra said the initial response to her tweet was overwhelmingly positive, with strangers expressing shock and outrage over the costs she would have been expected to pay if she didn’t have decent insurance.
“People were ready to fight for a kid they’d never met, and they were sharing their stories with me in the hopes that I’d fight for their children too,” Chandra wrote.
But as the influence of the tweet grew, so did the negative response.
“It was clear that people weren’t reading much past the headlines,” Chandra wrote. “They came at me swinging, picking fights I’d never asked for. They called me ungrateful, a thief, a lazy mooch, an attention whore.”
Chandra said the attacks became increasing personal and violent, with strangers making comments like “it would have been cheaper to make a new kid.”
Here’s how Chandra described a portion of the negative response she received:
“I was offered a .22 bullet, although I’m still not sure whom he meant it for, me or my child. One man took me up on the challenge I’d posed in the thread and declared that my son just wasn’t worth keeping alive anymore. There was even a percentage of the comments dedicated to the belief that I was a foreigner or, worse, a terrorist, which is when I started asking news outlets to use my full name, Alison, not Ali, since people seemed unable to believe that I was in fact a white chick from New Jersey.
The worst were the ones who attacked on the genetic front. Heterotaxy has no known cause, but in our case it was due to a genetic glitch, a previously unknown fault in the code of my own humanity that I passed down to my son. I don’t think I’ll ever come to terms with the fact that it was me who slipped the poison into his DNA, with knowing that his children (if he ever has them) will stand in front of this same 50-50 firing squad. It’s been my own private heartbreak. Now strangers were tearing barely healed scabs off those old wounds and I was running out of hands to stanch the bleeding.
Despite the negative responses, Chandra said she did not regret sharing Ethan’s hospital bill. She says enduring the hateful comments was worth it thanks to the response from one mother, who was finally able to get a proper diagnosis for her own son’s heterotaxy because of the coverage of Chandra’s story.
“It wasn’t important anymore that bitter internet trolls were calling me a manipulative money-grubbing ingrate. It didn’t matter that there were people fighting with each other and spouting conspiracy theories and competing to say the worst things they could fit into 140 characters in my Twitter mentions,” Chandra said. “There was a mama out there whose life would never be the same.”
Our lives have a lot more medical stuff in them than most. And that stuff costs money. A lot of it. More than we'll ever have. pic.twitter.com/v59lubElX2
— Ali (@aliranger29) June 11, 2017
Chandra said she never used to follow politics, but became engaged as Republicans began to push health-care legislation that would remove some of the protections guaranteed by the Affordable Care Act, commonly known as Obamacare.
The current version of the Republican health-care bill opens the door to rolling back some of the market regulations under Obamacare by allowing states to opt out of essential health benefit requirements, such as hospitalization, maternity care and mental health treatment.
The Congressional Budget Office estimates that 22 million people would lose coverage by 2026, under the Republican plan, mostly due to a roll-back of Medicaid expansion created by Obamacare.
“I know I’m a broken record on this, but this is literally life and death for so many kids like my son,” Chandra said. “So silence is not an option.”
This story has been updated to correct the name of the Affordable Care Act.