Before moving from Madison, Wisconsin to Portland, Oregon, I put a lot of thought into what health care I would need in my new city. Most important was a gastroenterologist—now that I’d been diagnosed with ulcerative colitis, I’d need one for the rest of my life.
I began my search for Oregon health insurance and a Portland GI doctor in July 2014, over six weeks before our arrival, figuring that should be plenty of time to line things up by the time I arrived.
Boy, was I mistaken.
The difficulties I encountered illustrate the barriers many people face in accessing health care. Even with Obamacare in place, numerous obstacles still seem to jump into Americans’ paths.
Different States, Different Enrollment Systems
Neither my husband nor I had employer-based health insurance in the year that we moved. We got our Wisconsin insurance through the still-new federal Health Insurance Marketplace, aka Obamacare. Back when we’d signed onto our Wisconsin plan, we’d logged onto the slick Healthcare.gov website, submitted our pertinent documents, shopped for plans, and signed up. It was pretty simple.
So in July 2014, I had reason to believe we could smoothly switch to an Oregon plan using the same system.
Not so. In summer 2014, Oregon was arguably the worst place in the country to attempt to enroll in individual health insurance. My home state, having decided to go its own unique way, had opted to create its own separate (and presumably better) website for enrollment in health coverage, contracting with the software company Oracle to set up an alternative enrollment site called Cover Oregon.
But that endeavor had failed. By summer 2014, the state of Oregon was suing Oracle for breach of contract and racketeering, a suit they eventually won.
I didn’t know any of this at the time. All I knew was that we needed Oregon health insurance in place by the time we moved, because if my condition took a turn for the worse during the stressful move, I could end up with an expensive hospital stay. This hadn’t happened to me yet, but I knew hospitalization was common for UC patients.
Rigid, Nonsensical Bureaucracy
I called Healthcare.gov to inquire about switching to an Oregon insurance plan. The nice woman on the phone confirmed that our move was a “qualifying event”—most new enrollment was only allowed in winter, but we qualified to enroll in a new plan midyear.
A few days later, after gathering our documentation together, I logged onto Healthcare.gov and submitted our W-2s and other required forms. The system gave me the go-ahead to shop for private insurance in Oregon, and it linked me to the ill-fated Cover Oregon website. Innocent of the website’s problems, I picked a plan called Moda Health, which had the largest network of doctors to choose from.
My troubles began in the next step, when I attempted applying to Moda. Even though our background and income hadn’t changed in the last few minutes, the Cover Oregon website now told me our income was too low to purchase private insurance. We had to instead enroll in Care Oregon, a state Medicaid program.
I did not want to enroll in Care Oregon. On Medicaid, my options would be dramatically limited, with far fewer clinics and doctors to choose from. I had been frustrated with my doctors in Madison but had not had other options on my plan, and I wanted more choices going forward. With my illness, it’s crucial to find a doctor you trust.
Also, we would only be on Care Oregon briefly. As soon as Ron got a teaching job, we knew our income would bump us out of the Medicaid pool, and we’d then have to start all over again with new insurance and, most likely, new doctors. I was anxious to find a long-term GI doctor, not just a stop-gap.
I called the Cover Oregon website. Could anything be done? We could, I explained, afford to pay for private insurance. We didn’t actually need or want Medicaid.
But the state was firm. Regardless of our assets and preferences, if we wanted insurance in Oregon right now, we could only enroll in Medicaid.
What’s more, because of delays caused by the limping enrollment system, our new Oregon insurance wouldn’t kick in until the beginning of October. That was appalling, I said to the woman on the other end of the phone. She seemed nonplussed, and quite used to hearing this complaint.
Long Delays in Care
I next asked the Cover Oregon woman how I could at least schedule with a gastroenterologist in advance of October. “I have a serious GI condition,” I explained, desperation creeping into my voice. “I really need to see someone as soon as possible.”
This only met with more bad news. Once enrolled in Care Oregon, I would first have to see a primary care physician, who would then refer me to a Care Oregon gastroenterologist…even though I already had a diagnosis and could get a referral from my Madison GI doctors.
This was the case because in the United States, unlike in many other countries, health care is administered at the state level. That means when you move from state to state, you might as well be moving to a different country. This is a big problem.
I wished there was a way to slam down a smartphone. Resigned and angry, I thanked the woman then stabbed the phone with my finger to hang up (which just hurt my finger). I then submitted all the paperwork to enroll us in Care Oregon, knowing I’d have to re-enroll in Moda within a month or two.
Nothing to do but jump through hoops. I made a primary care appointment, the first one I could get, for October 7th. This would be more than six weeks after our arrival in Portland, and more than three months after beginning the enrollment process. And it would still be one step away from seeing a GI doctor, the person I actually needed to see.
What if I had moved to Oregon with cancer, or had needed dialysis?
Sometimes, It Pays to Throw a Tantrum
We arrived in Portland in August. My health had held steady on the trip across the country—I was often tired, but my macrobiotic diet was keeping me comfortable, with only a couple bowel movements a day and little pain. I doubted I’d be able to work full time if I had needed to, but for now that was okay. Ron was quickly hired into a new teaching job, and my family helped us buy a house we couldn’t otherwise have afforded. We knew we were extremely fortunate in all of this. We counted our blessings (and privileges).
While Ron began teaching, I tackled the move, slowly unpacking and settling us in. I often needed to rest for hours between rounds of work. I was in a holding pattern, hoping my diet would keep making me better and that I could find a new doctor soon.
On October 7th, I finally drove to Northeast Portland, which was across town from our house but was the location of the closest available Care Oregon clinic, since there were indeed only a handful in the area.
The building was small and uninspiring, with a dingy waiting room, cheap plastic seats, an unsmiling woman behind the counter, and a tired woman seated in a corner with a disheveled, abiding look that indicated she was used to waiting long periods whenever she needed help with much of anything in life.
The woman at the counter was young, with hair pulled back in a no-nonsense ponytail. When I gave her my name, she brusquely told me I had missed my appointment.
My heart plunged into my stomach. “What?” I sputtered. “But…my appointment’s at nine.” It was eight forty-five.
“You’re required to arrive by eight-thirty for a nine o’clock appointment,” she said, hardly looking up at me as she moved papers around her desk. “Since it’s your first appointment, there’s intake paperwork you needed to do first. You were told this on the phone when you made the appointment.”
“No, I wasn’t,” I protested. My hands and knees were beginning to shake. A cold spike of fear and outrage shot through me, mostly on my own behalf, but also out of recognition that people who couldn’t afford other health care options would have no choice but to be treated in this way by this woman for as long as they needed Medicaid. What if I’d had to miss work to come here, only to be turned away?
I’m not proud to say that I found myself mimicking the woman’s condescending tone. “I am certain that no one said that to me on the phone.”
“Well, it’s standard procedure for us to inform all patients that they need to arrive a half-hour early, so I don’t know what to tell you.” She shrugged.
“Well, I am here, now.” I tried to keep my voice from shaking along with the rest of me. Somehow, from her position across the desk, this drab little woman suddenly held monumental power over my quality of life. “It’s not even nine yet. I can still fill out the paperwork.”
“I’m sorry,” she said, not sounding at all sorry. “This is standard procedure. You needed to be here by eight-thirty. You can fill out the paperwork, but you’ll have to come back another time for your appointment. Would you like to reschedule it now?” She looked up at me sweetly.
Rage was boiling within me. Dimly, one part of me felt aware of myself as a tall, slender, highly educated white woman who had had a lot of privilege in life, and of the fact that this was a shorter, rounder, less educated white woman who probably had a challenging job. But most of me was boiling, and my decorum went out the window.
“No,” I said loudly. She looked up sharply this time, and over her shoulder, I sensed someone pause unseen in a hallway behind her. “I have to see a doctor. Today. I have a nine o’clock appointment, and I have a life-threatening medical condition, and I urgently need to see a doctor, and I know the doctor is right here in the building and has the time to see me! I am not leaving until I see a doctor!” I think I may have stamped my foot. Who cared if I had slightly exaggerated my condition?
I sensed the disheveled woman watching me from the corner of the waiting room with bemusement.
Slowly, the woman at the desk spoke. “Well, after you fill out the paperwork, the doctor might have time for a short appointment.”
“Good,” I said, dazed but still shaking.
I had won.
Enrolled At Last
She handed me the clipboard and I stalked over to a chair, tossing a self-conscious half-smile at the other waiting woman, not sure whether to be embarrassed or triumphant. I hunched over the clipboard, flew through its litany of questions, and stalked back up to the counter to turn it in—by nine.
Well, after all that, the Care Oregon doctor was quite kind. She listened to my case history and quickly wrote me a referral to see a gastroenterologist. I left feeling relieved, and I tried to be more proud than embarrassed about my little tantrum. At least I knew I had my own back. When the system doesn’t, that’s important.
Soon afterwards, we received notice in the mail that we were no longer eligible for Care Oregon. Ron had gotten a second, longer-term teaching job, and as we had expected, our new income nudged us back into the private insurance bracket. I laughed bitterly at the letter.
Eventually, I had enrolled us in Moda Health—three months after I had initially tried to. But at least I got to keep my referral to the gastroenterologist.
A Broken System
Ron and I, with all our education and other privileges, had escaped the inferior service and options available to people on state-run health care. With our new, private plan, I was going to have dozens or even hundreds of gastroenterologists to choose from. I could find someone I really trusted, which was crucial with my complex condition.
I knew how lucky we were, and it’s that good fortune that compelled me to write here about this experience. Most people with fewer resources are busy just making ends meet. They don’t have time to write lengthy blog posts about the unfairness of it all.
But I do. My experience illustrates several flaws in the system:
- Patients are forced to change insurers when moving, rather than being able to stay on the same plan the way they could in many other countries.
- Ridiculous bureaucracy makes such changes slow and painful.
- State-run systems have few resources and small provider networks.
Not to mention the gaps that leave so many people without health care at all.
If the enrollment process was so difficult for me, with all my education and time and status, I could only imagine how much worse it would be for others. Many would not be able to complete the process.
The next post will discuss how to fix many of these problems.
