Faces of the Newly Insured

Twelve years ago, I traveled around the country meeting individuals and families who were scraping by without health insurance. Last year, I returned to the communities I visited to hear how the people I had met earlier were faring in the era of the Affordable Care Act (ACA). The five people featured in these video essays—Taneila, Cindy, Laura, Joyce, and Marcellus—live in small and midsized towns in south-central Illinois. These five—like all 31 of the formerly uninsured Illinois residents who I interviewed in 2003—were insured in 2015.

In 2003, all five seemed stuck in spirals of deteriorating health, low-wage employment, and medical debt, with no obvious way forward. Taneila was a young part-time college student with diabetes who was supporting herself with a part-time job. Cindy, fully immersed in caring for her special-needs baby, had left the workforce. Laura was working in the hotel industry. Joyce was working on and off as a nursing home aide and her husband, Marcellus, was working full time in a warehouse. All had applied for Medicaid but did not qualify under pre-expansion rules that limited coverage to low-income parents and severely disabled adults.

The Affordable Care Act has opened several paths forward. Many people can purchase reasonably affordable insurance through insurance marketplaces that lay out the costs of health plans and provide subsidies for low- and moderate-income consumers. Although the Supreme Court decision made Medicaid expansion a choice for states, low-income residents of states like Illinois that have expanded coverage—such as Laura and Joyce—have Medicaid as an affordable option as the law intended. Unfortunately, many of the people I caught up with in Texas, Mississippi, and Idaho—states that have so far declined the Medicaid expansion—are still uninsured.

In addition, thanks to the ACA, young adults can stay on their parents’ coverage until age 26 and employers of 50 or more full-time employees are now required to cover their workers. Today, Taneila works for an employer with health insurance benefits. While Cindy continues to cycle on and off coverage with her seasonal job, Marcellus is now insured through both Medicare and Medicaid. Yet all live with the repercussions of having been uninsured for long periods. I encourage you to hear their stories.

Taneila

A Young Adult's Limited Access to Coverage Before the ACA

Taneila grew up with reliable health insurance. As the daughter of a member of the military, she never thought about being unable to go to the doctor. She had easy access to high-quality care, which is why when she was diagnosed with type 2 diabetes at age 16 she assumed that she would always be able to keep her health under control.

What she did not realize at the time was that she would soon lose her coverage. Prior to the ACA, many young adults were not able to stay on their parents’ insurance beyond age 18. In fact, allowing all young adults to remain on their parents’ insurance up to age 26 has been one of the biggest successes of the ACA. In just the first three years after the law went into effect, nearly 8 million additional young adults enrolled in a parents’ health plan.

Taneila had looked forward to going to college in the university town of Champaign-Urbana, Illinois, where she’d grown up. But her college life was dominated by her lack of insurance and declining health. Working part time at Walgreens while attending school full time, she often did not have the $100 to pay for her monthly insulin. Even more important, Taneila says, she didn’t learn how to manage her diabetes. “I wasn’t well informed,” she says.

During those years she did get some help from a community health center, whose providers encouraged her to switch from insulin to the pills that the clinic sometimes received as samples from the pharmaceutical companies. But without regular access to medication, her eyesight became blurry, which interfered with her ability to keep up with her studies, and she developed serious fatigue that caused her to miss classes.

After working at Walgreens for three years, she was given a full-time position, which gave her access to insurance but made it impossible for her to continue studying. She eventually left college altogether and has not been able to complete her degree.

Today, Taneila works full time at Kraft Foods on the assembly line. The job has medical coverage. For a period of time, she managed her diabetes: she joined a Zumba class, went to weight-loss boot camp, and committed to eating right. Her doctors were so pleased that there was even talk of taking her off of her diabetes medication.

But, as Taneila has come to understand, health insurance is necessary but not sufficient for good health. A year or so ago Kraft, a nonunion factory, put her on the third shift. “That is from 10:30 pm to 7 am. I was exhausted. You never get used to it. I gained weight. I stopped exercising because I slept all day. And I was eating in the middle of the night at the cafeteria.” 

Still, she has not given up hope. She was recently moved to the second shift and says, “I’m taking my life back.”

Taneila believes that since the passage of the Affordable Care Act and Illinois’ decision to expand Medicaid eligibility, it’s become easier for young adults to take care of their health. “I see the difference now [post-ACA]. It’s in the air—more people can have insurance. I tell people about the struggle that it was when I was younger. When it comes to your health you really shouldn’t have to make those life-altering decisions like skipping medication that down the road could cause you to become blind or have a toe amputated. But now that I’m older—even though I am consistent with my medication—I worry about the long-term effects of the days when I couldn’t take care of my diabetes.”

Cindy

The Impact of Coverage Denials from Preexisting Conditions Linger

For nearly two decades, Cindy has lived with her husband and son in a farming town set in the middle of corn fields in central Illinois. With a population of 2,700, her town is dominated by the railroad tracks and highways that carry the crops and manufactured goods of the Rust Belt east to New York and west to California.

After high school, Cindy earned an associate’s degree in early childhood education and, before her son was born, she worked at a local Head Start early childhood learning program. Her job provided health insurance, and together with her husband, she was looking forward to being a first-time parent. Not even the gestational diabetes that she developed late in the pregnancy detracted from her excitement.

But then, “Max was born over a month early on Halloween in 2000 . . . it was because he had CMV, which is cytomegalovirus. Basically what it is, is a virus that everyone gets in their lifetime but if you get it while you’re pregnant, then it can cause harm to your baby. Your baby could die or have hearing problems, vision problems, or problems with learning when they get into school.” 

Cindy ended up staying home with Max, but the couple couldn’t afford the family health plan offered through her husband’s job as a mechanic. 

“I looked for other insurance that we could afford, and I sent away for a Blue Cross Blue Shield plan, but they wouldn’t cover the preexisting condition,” Cindy explains. Her son didn’t qualify for Kid Care, the Illinois Children’s Health Insurance Program, because they were over the income limit for the first 18 months of his life, but when its income threshold rose, Cindy enrolled him. Cindy, however, went without insurance for 10 years. “Basically, [at the time] it wasn’t worthwhile for me to go to work and get insurance because we’d lose Kid Care. Kind of like playing Russian Roulette.”

The threat of taking a bullet was real: The gestational diabetes that Cindy developed during her pregnancy was severe enough for her to need insulin injections twice each day, and she was told that gestational diabetes put her at higher risk for developing adult diabetes. Cindy relied upon the public health department health fair held at the local public library each year to get her blood tested.

When their son entered 5th grade, Cindy went back to work as a special education teaching assistant in the Urbana school district. Her annual income now is $14,000 and, with the addition of her husband’s income, Max is no longer eligible for Kid Care. Cindy and her husband decided to put Max on her husband’s insurance but that policy has refused to cover some of the services he needs (services that were covered by Kid Care). Recently Cindy and her husband had to pay $2,000 out of pocket for therapy for Max’s double vision.

Cindy is happy to be back at work, but part-time work in the school system has not solved all of her health care challenges. In March 2015 she was diagnosed with type 2 diabetes. Working closely with her medical team, she lost 40 pounds through diet and exercise. However, her job is seasonal: she is paid only for the nine months of the school year and loses her insurance for the summer months. This is a challenge Cindy shares with the 27 million Americans who work in part-time or seasonal jobs. While the ACA has expanded coverage to millions of workers, there still are far too many people, like Cindy, who move on and off of coverage, which leads them to skip care because of costs and may damage their health.

Laura

The Struggle for Self-Employed and At-Will Workers to Maintain Insurance

Laura, a soft-spoken woman with a wry sense of humor and a love for animals, has lived in Illinois for all of her 60 years. She has always supported herself: she had a cleaning business for many years that she supplemented with hospital or hotel receptionist jobs in the evenings. Like many self-employed people before the ACA, Laura was usually uninsured.

Always robustly healthy, Laura was taken aback when, in her mid-40s, she had an episode that her doctor initially thought was a heart attack. At the hospital the doctor admitted her for observation for 24 hours. But after a day, the doctor neglected to discharge her. When the doctor finally visited her after two days, he sent her for another round of tests and then discharged her with a prescription for an expensive antibiotic.

It turned out that she was not having a heart attack but rather had bronchitis with complications. Still, the cost of the hospital stay, including blood tests, an echocardiogram, and chest X-rays, was many thousands of dollars. After negotiation—with the help of the Illinois Attorney General’s Office and a local consumer advocacy organization—her bill was reduced to $4,000. For a time she faithfully sent the hospital $100 every month. “But that was not deemed sufficient and they took out a lien on my house,” she says.

Laura lives in a mobile home and could afford nothing beyond her basic bills and the hospital payment. Like many Americans who have no assets other than their home, Laura was terrified by the lien, worried that after decades of working she could end up homeless. She eventually made a deal with the hospital to pay $155 month, a sum that included interest that accrued on the loan the hospital finally arranged for her to take out.

One helpful bit of information Laura picked up during her hospital stay was that she has high blood pressure. But over the next decade, while she was paying back the hospital, she could not afford to go back to the doctor to monitor that condition. She also put off follow-up screenings for cancer (she had a benign tumor removed in her early 40s) and all dental care.

As she got older, she cut back on cleaning but added hours at her hotel receptionist jobs. But the hotels never provided insurance nor guaranteed that she would work a full complement of hours in any given week. Like many “at will” workers, Laura cannot count on knowing that her income will suffice at any given time.

In 2010, prior to the ACA’s coverage expansions, about 60 percent of people who tried to buy their own health plan didn’t buy one because they found the coverage difficult or impossible to afford.

By 2015 Laura’s health care situation improved. First, a local hospital started a financial assistance program for people in her position. And then, Illinois expanded Medicaid eligibility under the ACA. Laura qualified for Medicaid just in time. Her knee had worn out from years of scrubbing floors on her hands and knees, followed by years of standing on her feet at hotel reception desks. With Medicaid she was able to have knee surgery. Although she lost her job while recovering from surgery, she is now back at work at another hotel and feeling optimistic about a future in which she will be able to access the routine health care that can keep her self-sufficient, while also keeping her house.

Joyce and Marcellus

Relief for Low-Income Adults

Joyce and her husband, Marcellus, have worked hard to build a good life together despite many obstacles, including limited access to affordable health insurance coverage. This challenge is shared by many low-income people of color in the United States. While the ACA is starting to reduce racial and ethnic disparities in coverage, 13 percent of black working-age Americans were uninsured in 2014, compared with 9 percent of working-age whites.

Joyce

The best job Joyce ever had was at a Caterpillar plant, where she worked for eight years. During that time, she enjoyed excellent benefits, including good health insurance with dental care and full coverage for her three children. When she became pregnant in 1991, she was working in the Caterpillar paint shop. The work involved cleaning out the insides of large iron vats. Leaning into a vat, she bumped her stomach into a handle, causing a miscarriage. At the same time, the ongoing strain of the paint shop work led to a back injury that forced her to leave.

Since leaving Caterpillar, Joyce has worked on and off at a series of jobs as a nurse’s assistant in nursing homes, a profession that she loves despite the physically demanding labor involved. But none of these jobs gave her health insurance—and she went without coverage for more than 23 years.

Since 2014, Joyce has had health insurance through the ACA’s Medicaid expansion. “The year Obamacare was announced we got it right then,” she says.

Illinois’ decision to expand its Medicaid threshold allows her to continue working and take care of her health. She now has the “medical card” that she’d wished for, and applied for, repeatedly over the years.

Marcellus 

Marcellus has worked since he was a child, but never at a job that provided health insurance. Most of his employers did not offer insurance at all; some offered insurance but expected the employees to pay a larger share than they could afford on their low-wage salaries.

One of Marcellus’s longest-lasting jobs was at a dust-filled animal feed plant. The work involved stacking up bird seed and dog food, lifting sacks that weigh anywhere from 25 to 65 pounds, day in and day out. “Whoa, I mean, there’s no end to it,” Marcellus says. “Putting them on pallets. Stacking up pallets with forklifts. When the stack is over our heads, we throw the sacks up. You get it up there the best you can.”

For this work, Marcellus was paid $7 an hour.

In the early 2000s Marcellus injured his knee, tearing cartilage and sparking an infection. The local hospital treated the infection in its emergency room, but he did not have the $100 down payment required to have surgery to correct the torn cartilage. Over the years, Marcellus has suffered from a host of medical problems that have gone untreated, including periodic numbness in his arms, rectal bleeding, a leg injury, and a thumb infection.

Even with sporadic and insufficient treatment, by the mid-2000s Marcellus had accumulated $47,000 of medical debt. The hospital sent bills; collection agencies called and harassed the couple. Finally, Joyce and Marcellus paid a lawyer $500 to help them declare bankruptcy.       

In 2008, Marcellus injured his back lifting the sacks of seeds. He eventually hired a lawyer who arranged for the company to pay the medical bills as well as a substantial settlement. The settlement was enough for Joyce and Marcellus to get dentures, fix up their house, get a decent car, and put some funds away for college for their grandchildren.

After the surgery, Marcellus became eligible for Social Security Disability Insurance. He now receives health insurance through both Medicare and Medicaid. He supplements his income from disability with a part-time job doing janitorial work at a senior center, mowing lawns, and most recently washing dishes at a local hotel.

“I look back and I think ‘What would my life have been like if I had insurance?’” Marcellus says.