'We blame the sick for being expensive': the mother whose baby cost AOL $1m
By Jana Kasperkevic
Deanna Fei is not a healthcare expert. She is also not a privacy expert. According to her, she is just a mom – a mom forced to defend the decision to save her daughter’s life.
Fei came into the spotlight in February 2014 when Tim Armstrong, AOL’s CEO, sparked an nationwide debate about healthcare and privacy when he told employees that he was cutting their retirement benefits because of Obamacare and costs associated with two “distressed babies” born to the tech company’s employees. One of those babies was Fei’s.
Now the novelist is telling her story in a new book and hoping to shine a light on the complex and frightening intersection between health, privacy and insurance.
Mila was born nearly four months premature in October 2012. Afterward Fei and her husband Peter Goodman, then an editor at AOL, had a hard time connecting with people, Fei said. She spent months living in fear that her daughter, who was on life support, was not going to make it. In addition to worry and fear, there were also shame and guilt. Was she a bad mother? Was this her fault? Did she do something to make this happen? Should she have done something differently?
When Armstrong called her daughter “a distressed baby” and “put a price tag on her life” – $1m to be precise – he forced Fei to take a step back and say: “Why have I been judging her and myself so harshly all the time? This is something that happens,” she said.
Sitting in her stroller last month as her mother pushed her through Brooklyn’s Prospect Heights, Mila looked anything but distressed. “UPS truck!” she yelled as one of the delivery company’s brown trucks came into view. The brown truck is a familiar sight, often delivering packages ordered by Fei. Her brother Leo, who is three and a half, rode in circles around her and their mom on his scooter.
“They kind of rule our days,” said Fei, describing Mila as fierce. “Every day is a blessing.”
Mila is the main subject of Fei’s forthcoming book Girl in Glass, which tells the story of Mila’s birth and survival. The book, which comes out on 14 July, concentrates on the family’s struggle to save their fragile child and on the enormous challenges people face when their healthcare needs clash with the companies providing them.
“This feeling is common in American society now, where everyone kind of feels squeezed financially in one way or another. It’s very easy to feel that it’s always a zero sum game,” said Fei. “That’s how it is for 99% of us – you know, the not-Tim Armstrongs of the world.”
In his remarks, Armstrong made it seem that the company had no other choice than to change its 401(k) retirement plan after care for two premature babies cost company more than it expected in healthcare costs.
In the early 2014, he said:
While Fei’s family was not mentioned by name, it was easily identified as there were not many families with premature newborns. That, according to Deborah Peel, constitutes a violation of the Health Insurance Portability and Accountability Act (HIPAA) of 1996. Peel, a physician, is the founder and board member of Patient Privacy Rights, a foundation with a mission to restore patient control over personal health information...
Get the full story at The Guardian.
http://www.theguardian.com/us-news/2015/jul/04/deanna-fei-aol-distressed-baby-healthcare-privacy
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