It is birthday week for the Affordable Care Act, the official name of the health reform law passed a year ago. Previous CJR town halls have suggested that ordinary people, millions of whom are supposed to be helped by the Act, know little or nothing about it. But what about young adults who will benefit from one of the Act’s best provisions—being able to stay on their parents’ insurance until age twenty-six? Of any group, it’s students who arguably should know the most. So in honor of the Act’s first birthday I ambled down to the campus of New York University to chat with students hanging around in cafes, sitting on benches, and studying in buildings. Almost every one I approached answered apologetically that he or she knew nothing about the law. Some students had come from families of doctors. But their knowledge of the law differed little from those who didn’t.
Sarah Humphrey, age twenty, was standing outside a building where she takes drama classes. She’s majoring in musical theater; jobs being what they are for aspiring actresses, she knew getting health insurance could be a problem someday. “I know it (the law) makes health care more accessible,” Humphrey told me. “Considering I’m in the arts, it will make it more accessible for me.” She didn’t know how. As we talked more, she mentioned a couple other things about the law. Her parents were medical researchers for a drug company in New Jersey, and “they think they are going to be paid less but they don’t mind,” Humphrey said. “I was under the impression health care will cost less marginally because doctors will be paid less. I acknowledge that may be wrong because I live in a bit of a bubble.”
I asked when she would be off her parents’ insurance policy. “As soon as I’m out of the house, which is probably pretty soon,” she said. Did she know that she could stay on the policy until she turns twenty-six–six years from now? “I never heard of that. That’s very useful,” she said, and thanked me for telling her. Humphrey said she got most of her information from her peers and from the Internet. “How blessed we are to have Google,” she said. “If I had to go to the library I would know nothing.”
Twenty-one-year-old Dhara Patel from Yonkers will graduate in May with a degree in psychology. Her goal is to attend medical school in a year, but in the meantime she has applied for a teaching fellowship while she goes through the application process. “I don’t really know much,” she said. “I’m not up-to-date on the health care issues. I’m just too busy with school.” She did know that the law would affect her “greatly”, she told me. “I have the main idea,” she explained. “It’s very expensive, and the service isn’t fair for the amount of money we’re paying.” She was particularly upset with NYU’s student health plan. She pays a $25 copayment to see a dermatologist who is treating her, and has spent $1000 out-of-pocket for medication, pointing out that the student plan had a yearly cap on medication. “For the last two refills I had to pay out of pocket,” she said. “I paid $900 for the medication.”
Patel said she was no longer on her parents’ health insurance policy “because I’m over twenty and my parents’ policies don’t cover kids over nineteen.” Her mother just got laid off from a bank job, but her father, a computer technician, still has coverage. She, too, knew nothing about staying longer on her dad’s insurance. “I don’t think my dad knows,” she said.
Our conversation touched on how she gets her news, and Patel had strong opinions about that. Lately, she has been trying to keep up on the news by going to CNN.com, the BBC, Yahoo headlines or Google News—“something,” she says, “that’s vocabulary friendly and not too long.” What about The New York Times—a paper that certainly has covered health care. “It’s too long,” she said. “It’s dreadful to read; why are all those big words there? They should make an article short and sweet and get to the point,” adding that she did not like the way the paper criticizes people. “Everyone has a right to express their feelings and emotions.”
As our chat ended, Patel said she was “happy people are getting health care.” Are they getting it now, I asked? “I don’t know,” she said.
When I asked twenty-eight-year-old Rebecca Krauss what she knew about the health law, she quickly replied “nothing…. I’m a pretty healthy person, so health care issues don’t tend to affect me.” She did, however, know that she had two kinds of coverage—the NYU student plan and an individual policy from Blue Cross that her parents were paying for. Krauss, who is a grad student in urban planning, said she switched back and forth between the policies depending on what she had to pay for her medicines. NYU has a “very low maximum” for drug expenses, she explained. She said the number that sticks in her head is $2000. “I’m over it in two months.” I asked if anyone had told her that the health law said insurance could no longer have annual caps on coverage, a provision that took effect last September. “Nobody told me the cap had been lifted,” Krauss said. “I tried to get the NYU drug coverage in November. They were rejecting my claims.”
Like others I interviewed, Krauss said she “tended to be more of a headline reader than look[ing] for any depth.” The exception was stories about sustainability and urban planning. “Health care is not a topic of interest. It probably should be. But I’m not paying for it yet,” she said.
Nineteen-year-old Nikki Mokrzycki, a sophomore from Medina, Ohio, did know that she could stay on her parents’ health insurance until she turned twenty-six. Her parents knew that and told her over Christmas break. “I wish I knew more about this,” she told me. “I sound like some dumb kid who doesn’t know anything.” She said she would be interested in reading more about health care if she had the time, but now confines her reading to issues about food and the environment, her major interests. “If I read a health care article, there would be lots of terms I don’t understand so I would need some background on it,” she said.
Sarah Schneider, age twenty-two, was eating a bowl of noodle soup when I met her at a Japanese food store on Third Avenue. Her father is a cardiologist and her mother a psychologist. “I come from a medical family and know surprisingly little,” she explained. Schneider knew she could remain covered on her parents’ health plans until she was twenty-six. I asked her how she knew that. “My friends have talked about it,” she said.
She thought about what she knew about the health care law. “I heard something about health care remaining private and everyone has to have it. But is that universal,” she asked. She then asked me a question. “Do you want to tell me more about the law in case someone asks me?” Schneider did say she read the Times science section and the articles there about health. It was just health policy stuff that turned her off.
I next stopped a couple of journalism students, thinking they might be more up on the health law since news, of course, is their business. A twenty-seven-year-old graduate student named Jessica, who would not give her last name, was frank. “I know nothing about the health care law,” she said. “I don’t remember hearing anything about it. Maybe I tuned out because it doesn’t affect me.” She says she has coverage through her husband’s insurance, and has used the coverage only once. I asked her what she read. “The Times online and CNN.com,” she replied. “I weed out what I don’t want to read.”
At first, thirty-three-year-old Joaquin Andrade, a journalism grad student, didn’t want to chat. He was Brazilian—a TV reporter, he said–and thought I should be talking to an American. But the more we chatted, the more it became clear he knew about the U.S. health care law—in fact, he knew much more than the American students in my admittedly small sample. He told me that when he learned he would be coming to the U.S., he had read the news to learn what was happening in the country. He knew the health law passed a year ago, and that if you’re not covered, you will have to be. “I believe the bill has passed but it takes time for the changes to come,” he told me. Bingo. That was spot on. “The insurance companies were mad because it will cost them more money.” Andrade knew from his reading that insurers, at least publicly, were not keen on the law. He had also read about the controversy over mammography, and explained what some of it was about.
All of this is disheartening. Comments like the ones I heard from presumably bright students studying at one of the country’s premier universities about the crowning domestic achievement of the Obama administration have profound implications for those who still believe journalism can perform an educational function. The students have presented a devastating critique of our coverage of health reform. Its message: we need to forget the stories that those with vested interests want us to write. The population is not ready (and clearly not even interested) in stories about the nitty-gritty of who is going to run some state’s insurance exchange, whether a medical home model is up and running, how an accountable care organization may or may not slow down medical cost inflation, or whether an insurer complies with the MLR. The coverage has been too much Politico and too much policy wonk.
Dear colleagues, we have failed the public, a point made again and again by the polls. As the Affordable Care Act enters its second year, it’s time to redefine how to connect with the public in ways that matter to them. That is my birthday wish.
Trudy Lieberman is a longtime contributing editor to the Columbia Journalism Review. She is the lead writer for CJR's Covering the Health Care Fight. She also blogs for Health News Review and the Center for Health Journalism. Follow her on Twitter @Trudy_Lieberman.