Although 42 million Americans are listed as lacking health care coverage, the number actually is much higher at any point in time in one year because the ranks of the uninsured are always "churning"—people have coverage, lose it, then may gain it again later. Thus the number of uninsured is more than 60 million in the course of one year and above 80 million at any time over four years, according to Fund-supported research. Instability of insurance disproportionately affects low-income Americans, minorities, and young adults: two-thirds of those under 200 percent of poverty; 61 percent of Hispanics and half of African Americans; and half of young adults had a time without coverage over the four-year period studied.

Note: To protect the privacy of the subjects of these profiles, pseudonyms have been used throughout, unless otherwise indicated. The images are not of actual subjects or their places of work/residence.

heva, a handsome 50-year-old African-American 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 harms those who are trying to hold down their minimum wage jobs despite dealing with chronic health problems.

Sheva explains: "Oh, I know that going on and off Mass Health [the Massachusetts Medicaid program] has had a negative effect on my health, and my daughters' too. I have high blood pressure, a bad back, and diabetes. You get awfully stressed trying to decide whether you're going to pay this bill or buy food or this or that.

"Don't get me wrong, I've been very, very blessed. But that's the way it is now. If you're right on the edge [in terms of income-based eligibility], they will kick you to the curb," she says. "I was told recently, when I had to re-certify after being on, I guess, for nine months. I was told recently that the reason they're allowing me to stay for one extra year, it had something to do with my income. I'm not sure exactly the way they worded it because I was really holding my breath. I was terrified that they were going to kick me off again. I have very expensive medications that I take for blood pressure and when I am off, I swear to God, I spend, I'm serious, I spend probably close to $200 a month for my blood pressure meds."

Sheva recalls what is was like a year ago when her annual income went up to $15,000; she and her family were taken off Mass Health, and she couldn't afford to pay for her blood pressure medication. During that time she would make various trade-offs, sometimes buying one of her medicines and sometimes buying another, worrying that in some cases it is more dangerous to take medication erratically than not to take it at all, but not knowing how else to manage. Rarely could she afford all three of the medications that she is supposed to take.

"I get my meds from Stop & Shop and every time I would go to get them, I know the pharmacists felt very bad for me," she says. "They probably said, 'This poor woman.' Not only do I look like poop trying to write all these checks, you know, trying to keep my composure and trying to not really grovel that much. I know they were saying to themselves, 'How in the heck can somebody afford to pay $100 and something for this med this week?' So what I would do is, I would buy half of the bottle sometimes and thank God, they would let me do that. And I would get this one and not this one, you know."

Over the course of the 25 years during which she has raised her four daughters, three now in college and one in high school, Sheva and her family have been on and off Medicaid more times than she can remember. Her marriage broke up shortly after her fourth daughter was born. She and her husband went to court to negotiate child support, which he never ended up paying. "MassHealth took me on just by approval because I was not on public assistance [welfare] and most of their clients were people who were on assistance. But they took me on."

For the next 14 years, she operated a small day care center in her home. While the business was not terribly lucrative, it did allow her to be at home and available to her daughters as they were growing up. "I was off and on Mass Health because sometimes if you made a little bit too much they would kick you off." The meaning of "a little too much" changed repeatedly over the years, but always hovered at or around her typical annual income of about $14,000.

Seven years ago, when state regulations for family day care centers became more burdensome to her, Sheva decided to close her business and train as a certified nurse assistant. For three years, she worked for a nursing home that offered health insurance. During those years she was off Mass Health but able, just barely, to afford the employment-based health insurance premiums.

As Sheva learned, nursing home work is difficult. On a given shift she might be assigned to feed, bathe, and dress 15 or more patients, some of them recalcitrant or demented. She often was expected to work short-handed when other employees didn't show up for their shifts. "I did every shift and let me tell you, none of them are easy, even when you do an overnight. And that's what I ended up doing, an overnight shift. And that's hard on your body, too. I mean other things contributed to my high blood pressure being as bad as it is, I know."

Three years into this job, Sheva was hit by a car. Since the accident, she has suffered from severe back pain and is no longer able to lift nursing home patients. She continues to work as a home health aid, work that is somewhat less physically demanding than nursing home job, and generally has been able to arrange employement that does not involve a great deal of lifting. The trade-off is that she no longer has health insurance.

Sheva found chiropractic care helpful for her back, but the settlement she received from the insurance company of the driver who hit her only paid for treatment for the first year after the accident. At this point, she goes to the chiropractor sporadically, whenever she can save up enough money. In between visits, she exercises religiously, carries out a stretching routine, has lost weight, and is careful about how she moves. Still, she holds herself rigidly and experiences near-constant pain.

"My friend, she always says, 'Oh please come back to work at the nursing home. You know, they'll pay you this, they'll pay you that.' And I say, 'Are you joking? You know, what will I be able to do, blow these people over on their sides? I can't even lift one person!' I can remember at the end of the time that I worked there, being out in the hallway just stopped in my steps, could not move, the pain was so bad. And I think at that time stress was triggering it and I was so embarrassed, sometimes I would just go downstairs and just cry because I literally could not move another step. I could not. And now when stress gets bad that's when my back hurts.

"People don't realize; it's horrible, it is really. And even my kids, you stop after a while wanting to express how horrible you feel because I don't want my children to feel bad because, you know, I'm stressed and it's not working and I can't move. People just don't understand. I can remember going to the mall and I swear to God, not being able to walk myself out before I sat down and take some pills. And I try to stay away from as much stuff as I can because I already take pills for my high blood pressure. And I remember going there last year, maybe the beginning of last year and not being able to walk. I had to sit down at a table and make believe I wanted to just have something to drink because I could not move. I was thinking, 'You're going to have to bring an ambulance to take me out of here. I can't move.'"

For the most part, Sheva thinks she and her daughters have been relatively healthy. That is why, when they have been off Mass Health, she wouldn't worry much about her inability to pay for routine preventive care. "When you don't have any serious problems you don't worry so much about seeing the doctor. You worry about emergencies but you don't worry about seeing the doctor," she says.

She suspects that may be the reason that her diabetes wasn't caught as early as would have been optimal. A year or so ago, when she was diagnosed with Type 2 diabetes, she was shocked. She is supposed to take medication daily and test her blood sugar several times daily. She has been able to obtain her medication consistently. The test strips, however, are expensive, and no local clinics or organizations seem to give them out for free. Thus, the last time she lost her Mass Health coverage, she stopped testing her blood.

When Sheva and her daughters have been without insurance or Mass Health, she has tracked down every possible free medical program in her part of Massachusetts. She learned that she can get vaccinations and school check-ups for her daughters at a county office, and can get discounts on certain drugs at certain pharmacies. Ever resourceful, she takes advantage of all of these services, while realizing that, by using a variety of programs when they lack Mass Health coverage, she and her daughters lack any continuity of care.

One of Sheva's most creative medical moments came last year when her 14-year-old daughter, a sporadic asthma sufferer, seemed to be on the verge of an attack one night. "She was having symptoms. I wasn't quite sure whether her asthma was getting ready to kick in," Sheva says. "You know, they have that kind of shortness of breath, very shallow breathing which I'm not sure is asthma because I'm still learning, you know. And I can't afford to take her to the emergency room or the doctor if it's not really an asthma attack. She's still learning, too, so she's kind of like, 'Ma, I don't feel good.' ...And I was like, 'Oh my God, you know, we don't have any insurance. What in the heck am I going to do?' If I have to, I will take her to the emergency room but I was like, 'I don't know. I don't know what I should do. I don't have the money and I'm not even sure that this is an asthma attack.' So I said, 'Yeah, well, tomorrow when you'll go to school you can go to the nurse and tell her you don't feel good. Tell her you have asthma. Ask her to take a listen to your chest.'

"The next day the school nurse listened to her chest and she said she thought she was having an asthma attack and that I should come and get her. And I did come and get her and I took her to her doctor. We did not have Mass Health and we did not have insurance and, of course, I accumulated a bill from them that I just recently paid," she says. "They threatened me. They sent a collection agency after me. I think it was $155. I just let it wait and wait and they threatened me and they threatened me and then finally, I paid a little bit and then I paid the rest of it off."

Sheva reflects on the human needs and frailties she encounters in her work as a home health aid. "I do a lot of hospice work, which consists of a lot of emotional care, sitting with people 'til the end. It's very enriching to your soul because not everybody can do that, sit with someone who's dying. It's not easy. I consider it a blessing. I didn't think I was going to be able to do it. . . . But I found as you go along learning the job that those kinds of things that you give to people are really unselfish and a blessing and I always say to my clients, 'Oh thank you.' I always say to my clients, 'I just pray that someday someone is as kind to me and as good to me.'"

As a hospice worker, Sheva understands the importance of consistency in care. If her patients miss a few days of medication, their pain becomes unbearable. If she skips a few turns of turning them over in bed, they develop excruciating bed sores. If no one is available to sit with them for a shift or two, they may well die on their own, without a warm hand to hold.

It is this understanding that leads to Sheva's frustration. She knows that the on-and-off medication and medical care for her high blood pressure and diabetes are damaging in the short run and possibly lethal in the long run. Until now, so it seems, Sheva has not been lucky enough to find "someone" who is as good and kind to her as she is to her patients.

Copyright January 2005, Susan Sered and Rushika Fernandopulle, used with permission of the authors.