|There is intense debate over what to do about the 44 million Americans shown by U.S. Census data to lack health insurance. But the human face of the problem is often lost in the discussion. The stories below illustrate the many costs and consequences of living without coverage—offering windows into the lives of young and middle aged people, white and African American, middle class and working class families.
These "Profiles of the Uninsured" were gathered by anthropologist Susan Sered and Rushika Fernandopulle, M.D., who in 2003 went beyond the statistics to study why so many Americans fall through the cracks in the health care system and what it means to scrape by without consistent access to care. Sered and Fernandopulle conducted in-depth interviews with more than 120 uninsured men and women and several dozen health care providers and administrators. In each community, they explored the clinics, hospitals, pharmacies, and service organizations used by the uninsured and participated in numerous community events.
These stories provide just a flavor of their work, more of which was published in 2005 as Uninsured in America: Life and Death in the Land of Opportunity by the University of California Press.
|Daniel: Eligible for Social Security Disability Insurance, But Waiting||Except for blindness in one eye, an inability to turn his neck, periodic numbness in his fingers and chronic back pain, Daniel is extraordinarily healthy. At age 61, with more than 40 years of construction work under his belt, he is thin, wiry, takes no medications, and can't even remember the last time he was sick. [more]
|Fran: Struggling with Diabetes||Danville, Illinois, is a small city in the heart of the Rust Belt. Like residents of many traditional manufacturing cities, Danville's citizens have had to cope with new, often harsh economic realities in recent years. As large companies have laid off workers and moved more operations overseas, Danville has lost many of the jobs that, for years, sustained this blue collar community. [more]
|Lenny: Saddled with Medical Debt||Lenny cannot quite believe how fast the bills piled up, or how quickly he went from being known as someone who has always worked and looked after his family to being someone who needs county assistance. [more]
|Sheva: On and Off Health Insurance Coverage||Sheva, a handsome 50-year-old woman with waist-long braided dark hair, could serve as a one-woman field test for how Medicaid enrollment supports low-income families, and how losing Medicaid affects those trying to hold down their minimum wage jobs despite dealing with chronic health problems. [more]
|Toni: Chronic Illness Takes its Toll||Toni knows she should be under medical supervision for her borderline diabetes. All she has to do is look at her wheelchair-bound uncle to be reminded of the importance of monitoring chronic illnesses so that they don't turn into life-threatening disabilities. [more]
|Ryan: Young, Well-Educated, and Without a Net||On a rainy evening in Boston, Ryan's bicycle commute home from work led him to a path often traveled by American 20-somethings—taking jobs for the health insurance benefits they offer rather than for the career opportunities they may provide. [more]|
HOW THESE PROFILES WERE DEVELOPED
These profiles are drawn from interviews conducted in 2003 with 120 uninsured men and women in Idaho, Texas, Mississippi, Illinois, and Massachusetts. Interviewees were contacted through local churches, community organizations, friends and colleagues, at yard sales, bars and libraries, at local pharmacies and grocery stores, via notices posted in public places, and through additional contacts suggested by those initially interviewed. Conversations covered matters directly related to illness and medical care, as well as more general personal anecdotes, family stories, political opinions, and observations about neighborhoods and workplaces.
The majority of the interviewees are women, reflecting the fact that women are more often responsible than men for the health of their families as well as their own health. Interviewees were white, African American, and Hispanic, ranging in age from 19 to 64. Interviews, all of which were tape recorded, lasted one to two hours and sometimes were followed up by phone calls or letters. Each interviewee received a $25 honorarium as a token of appreciation for participating.
All profiles here are of real individuals; none is a composite of more than one interviewee or has been otherwise factually modified. The names of all interviewees have been changed, as have other identifying details, to protect subjects' privacy.
Funding for the fieldwork and tape transcriptions was provided by Harvard Divinity School's Center for the Study of World Religions and Harvard University's Interfaculty Program for Health Systems Improvement. This research project was approved by Harvard University's Institutional Review Board. All interviewees gave the researchers informed consent to participate in this project.
Any opinions stated in these profiles are those of the authors, and not necessarily those of the supporting research centers or Harvard University and do not necessarily reflect the views of The Commonwealth Fund, its Board of Directors, staff, or grantees. Please address comments on this project to: Susan Sered, at [email protected].