Her spine is so curved she can barely stand. What will happen if she loses Medicaid?

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Welcome to Where It Hurts, a weeklong series that tells the stories of people in the United States who have gone without health insurance when they needed it most. You can read more from the series here.

Going without has always been the story of health care in the United States. Even with the gains made under the Affordable Care Act, a greater percentage of Americans are uninsured than citizens in most other similarly wealthy countries. We pay more and receive less in return. Things could still get worse.

Recent estimates from the Congressional Budget Office predict that by 2018, the Republicans’ proposed American Health Care Act would increase the number of uninsured people by 14 million. That number will grow to 24 million come 2026. An analysis from the White House puts that increase even higher, at 26 million. That’s nearly the entire population of Texas, the second largest state in the country, losing their coverage all at once.


These are the stories behind those numbers.

Mary is 56 years old. She asked that we not use her full name.

I was diagnosed with scoliosis when I was 12 years old. At the time, I was having terrible back pain and I didn't know why. My parents took me to a chiropractor, but even that wasn't really fixing it. Nothing fixes it, really. They finally took an X-ray and that's when they discovered my spine was curved. It was bad enough that they sent me right to an orthopedic specialist and I was put in a body cast for six weeks. Then I was put in what was called a Milwaukee brace, which is a little like an iron maiden. It’s metal and leather. A stainless steel bar goes down from a chin piece, and that goes down to a girdle made of metal. Wearing it wasn't easy.

Not everyone who has scoliosis as a child will have it into adulthood, but that's what happened to me. It never got better, and actually got worse. I’ve been to so many doctors over the course of my lifetime. I’ve been to all kinds of physical therapists. A mild case of scoliosis is usually somewhere around 10 degrees. The biggest curve in my spine is now 61 degrees.

I had Medicaid while raising my children because I wasn't married. But after the kids grew up, I was kicked off the program. So from about 2001 until the Affordable Care Act passed, I was piecing together care wherever I could get it. I saw doctors at free clinics, paid out of pocket for everything—tests, doctor visits, medication for pain and my hypothyroidism, just everything. The medication for my neurological pain was at least $50. The thyroid medication was $10. It was all about $100 a month.


I tend to think that if you put the question to the universe, you’ll get the answer back. I'm very good at these things. I've always been able to make it work, but I know not everyone can. Wherever I lived I would search out whatever free clinic I could find. Not every place has these, though.


For a while I was living somewhere with a federal clinic that was about 40 miles away. It was the only place I could see a doctor. I don’t have a car—it broke down years ago and I couldn't afford to replace it. I had to rely entirely on friends and family to get to and from the doctor. But it's not a choice. You have to see a doctor. It's not like I can just walk into a pharmacy for some of this stuff.

It was all very ad hoc. I held lots of odd jobs. I traveled with a Renaissance Faire for a few years, basically selling things while putting on a funny English accent. But that was when I was younger. The older I got, the more my spine seemed to be collapsing. I don’t know how else to explain it, but the curvature in my spine got worse and worse.


Eventually, I couldn't work full-time. Right now I work at a call center. I work about 25 to 30 hours a week. I am one of those people who conducts polls over the phone. If you want to know what Americans are feeling about this country, I can tell you. I talk to people all day. I can’t lift. I can’t stand. Walking is difficult—I can’t do it all day long. This is the job I can do. I can sit.


As long as I have this job I can maintain insurance, which I have through the Medicaid expansion in my state. I live in HUD housing because I have such low income. But if I lose this insurance—if I lose what I finally have, I don’t know what I’d do. I can't get insurance through my job. I’m not management, I'm just a line worker. What will happen to me?

For many years, I had to do what I could to get medical care wherever I could. When the ACA came through, it was like I became a normal person. I could just go to my doctor down the block. I get all of my testing, I get all of my medicine. I've got scoliosis and that pain, and arthritis in my right knee, but I'm otherwise in excellent health. My heart is as strong as a horse. But that's because I've been under a doctor's care for a few years.


But now what they're talking about—repealing the ACA and making all of these cuts. One week if they had to live in my body they’d sing a different tune. I'm not alone. And that makes it so upsetting. Because I hear these stories—I'm not the only one they're going to throw to the wolves. It's terrifying. For them, for me. And for what? To give rich people more money?

I can piece something together—I know how to make things work. But so many people don't. And they're going to suffer more for this.

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