In 2003 and 2004, I traveled to communities in Texas, Mississippi, Illinois, Idaho and Massachusetts to meet individuals and families scraping by without health insurance. They told me stories of jobs that did not provide health insurance, untreated health problems that led to lay-offs, declining employability, medical debt, evictions and loss of homes, and sometimes even death. The results of that project were published in 2005 as “Uninsured in America: Life and Death in the Land of Opportunity” by University of California Press.
In 2015, I returned to these communities to learn how the people I had originally interviewed were faring in the wake of the Affordable Care Act as well as the broad social and economic changes of the past decade. Altogether, I looked for 145 people and was able to re-interview 82. While some of the people were now insured and far healthier than they had been a decade earlier (see “Faces of the Newly Insured”), at least 10 people were dead and 36 people had disappeared without a trace from the homes and communities in which they’d been living when I first met them.
It took weeks to get a glimpse of the lives of those less visible Americans who generally manage to rent housing of some sort for periods of time but teeter on a financial edge that keeps them moving from place to place – with all of the negative implications that residential instability have for health and health care.
I first met Shanice in 2003 at one of the larger Black churches in Decatur. She was happy to share her story with me:
“When I was 18 I worked a job, it was right after coming out of high school. No insurance and they said I wasn’t eligible for Medicaid. My doctor said I needed to get my tonsils taken out cause they were so swollen it was almost causing me not to be able to breathe… And so I had to go on like a payment plan with the doctor… The whole surgery, the surgeon, the day at the hospital and then I had a setback and had to go back into the hospital cost $15,000. During the following year collection agencies called day and night. Said that I would be going to jail if I didn’t pay them.” At age 20, Shanice filed for bankruptcy.
A few years later Shanice gave birth to her daughter. By this time, Shanice was working for a storefront loan company that provided health insurance for her, but not for her daughter (she would have had to pay a premium she could not afford on her salary).
Before long, their statuses reversed. When Illinois expanded Medicaid for children (Kid Care) her daughter became covered. Shanice, having left her job to go back to school, became uninsured. She was well aware of the risk she was taking but was determined to build a better future for herself and her daughter. “It wasn’t just me living this carefree, don’t-worry-about- tomorrow life. Now I have someone that was dependent on me so I had to make decisions for the future.” Shanice also began to eat healthier meals and lost over one hundred pounds.
In 2003, I described Shanice in my notes as “a young woman on the way up.” She had just completed cosmetology school, was working part-time at her church, and was looking for her first professional job.
In 2004, I spoke with Shanice again. With a sense of resignation, she told me that medical and credit card debt had piled up and she was preparing to declare bankruptcy a second time.
In 2015, I returned to the address at which Shanice was living when I initially met her. She had moved on and none of the current neighbors recognized her name. I continued on, checking out another half dozen addresses I found for her on various search engines. Stopping by her church, I was told, “Shanice is no longer a member of this church. She’s moved.” No one at the church knew where.
In early 2016, I made another visit to Decatur. A member of Shanice’s (former) church had heard she was working at an office. I called the office and was told Shanice had been hired there as a "temp" and was no longer working there. Welcome to the new American economy, Shanice.
Health and Housing
I have no doubt that if Shanice had turned 18 in the era of the Affordable Care Act, her experiences would have been quite different. She either would have been able to stay on her parents’ health insurance or she would have been eligible for Medicaid (Illinois has expanded Medicaid under the ACA). Not only would she have avoided medical debt and ensuing bankruptcy, but she may even have been able to access treatment that could have averted the expensive surgery to begin with.
The ACA would not, however, have saved her from the consequences of housing challenges.
At a community health center in Decatur, nurse administrators Karen Schneller and Tanya Andricks explain that it is impossible to provide follow-up care for patients who can’t be reached – whose phones are turned off and mail is returned “addressee unknown.” Even if they are able to access care in the next place they land, people like Shanice find different facilities and providers prefer different medication and treatment protocols. This results in a range of problems resulting from stopping and starting diagnostic and medication regimes with each move.
In my quest to re-interview Shanice and other uninsured men and women whom I’d met back in 2003, I visited abandoned housing projects, meth houses, developments abutting unfenced dumps, squatters living in shacks without floors, and a building in which a pack of feral-looking dogs roamed the hallway.
I do not know if Shanice and her daughter have been fortunate enough to avoid these sorts of grossly insalubrious living quarters. I do, however, know that they are unlikely to have benefited from the health-enhancing social capital that comes with living in a stable community or from the health-preserving care that comes with having a stable medical home.
Susan Sered, PhD, author of “Can't Catch a Break: Gender, Jail, and the Limits of Personal Responsibility,” is professor of Sociology at Suffolk University in Boston.