It is becoming common knowledge around the world that United States’ health insurance and medical payment system is completely fucked. Here is my story about how lucky I am, and also how messed up this is.
Health Insurance plans are required to continue coverage until the end of the month in which you had a “change in circumstance.” I guess this is to give you time to figure out where your new insurance is coming from (but it also makes for cleaner start/end dates, and allows employers time to decide if they’ll keep you before committing to the paperwork of health insurance). Jason died at 9:30 in the morning on April 30th. I was hospitalized. At midnight, I lost health insurance coverage, because it was the end of the month.
The wonderful people at MyTech (Jason’s employer) saved me. They noticed this and took the best action they could. They signed me up for COBRA. So, on May 1st, while I was still in the hospital, unable to sit up for fear my spine would fracture or the internal bleeding would rip open and dosed on pain killers, I was transferred to a COBRA plan. (COBRA is the insurance that is supposed to cover the gap from one plan to the next between employers.) Again, the folks at MyTech thought about my circumstances and put me on a plan that would cover as much as possible. Then they paid for that plan for 6 months. They quite literally bought me time to figure out what was next.
Because my “change in circumstances” happened in April, I didn’t qualify for state insurance in October, when MyTech stopped paying for me. (You have 30-60 days to apply for insurance after your “change in circumstance.) I continued to pay for COBRA until the open enrollment period in started on December 1st. It was just over $400/month to cover me, a healthy adult in my early thirties with no risk factors. On December 1st, I found out that my COBRA plan was being discontinued and I would have to choose a new plan. The only options they gave me were Health Savings Accounts (HSAs). This is because MyTech shifted to a different model of health insurance for their employees, so my COBRA through MyTech was no longer available. (For MyTech employees, MyTech was helping them fund their HSA and make sure it was going to be a smooth cut over from one plan to the other. For me, I didn’t and couldn’t qualify because I am not an employee.)
I stopped going to physical therapy and did the bare minimum of doctor appointments that I could. For me, that meant keeping up my monthly allergy shots, and not doing anything more. I had been told by a therapist and a primary care physician that I should consider antidepressants and was even give an prescription. I sent the prescription in, but without insurance and with no knowledge of when I might have insurance again, I decided against starting antidepressants. I let the prescription expire.
I started looking into state-assisted insurance options. I was a full-time student, full-time freelance, and still struggling to figure out what was next in life in general. I filled out pages of forms and sent them in. I got confusing paperwork back asking for other forms. I sent in more paperwork. It became January. I paid for another month of COBRA to retroactively cover December. I spent an hour on hold and then forty-five minutes on the phone with someone who wanted to help, but was baffled by my situation. Tracking freelance income is like dumping out a bucket of bouncy balls and then trying to pick them all up. We found a method that made sense and went for it. I filled out more paperwork and sent it more pay stubs.
The second week of February, I paid another month of COBRA because I hadn’t been confirmed in another health insurance system. A week later, I got a letter saying I was covered retroactively starting December 1st by the state. Though I’d paid for the COBRA coverage and couldn’t get that money back, I was still glad to be covered. I turned in yet more paperwork, but gave up on getting any reimbursements for any of the expenses I had paid out of pocket. It was just too much paperwork.
In March I got a letter stating I needed to choose a new health plan as my 4 months on state-paid insurance was ending. I didn’t understand what that meant and in the midst of moving my grandmother, writing my thesis, and trying to survive my grief I ignored it. In April, the state automatically dumped me onto a Medicaid plan. The plan covered none of my providers, had no clinics near me, and would have required I change all of my appointments (which means having new “initial appointments” which take longer and cost more).
I paid for my health care out of pocket in April while filling out yet more paperwork to change to a more appropriate Medicaid plan. This required research into the four plans available, understanding what each plan offered, and contacting multiple providers’ offices to find out if they took a specific plan. The plans only tell you in vague terms who takes them. It is up to you, the patient, to contact each of your providers and ask them specifically if they accept a certain plan. In some cases, plans are accepted by one provider in an office and not another. It is a completely bonkers broken system.
I did my research. I figured out which plan covered as much as possible. I filled out the paperwork to change plans. Then I waited. In late May, I found out I was approved for the change and got another new set of insurance cards. I kept going to my allergy appointments.
In September, I got a year-overdue physical. The physical got me a prescription to get back into physical therapy and for antidepressants. A week later, I went back with a bullseye rash and classic Lyme’s disease presentation. I started antidepressants and antibiotics within five days of each other. Then I developed some weird neurological symptoms (it was raining on the back of my hands for 3 weeks) which required yet more clinic visits. At the end of all of that, I paid about $15 out of pocket for my care.
On December 1st, I moved off of Medicaid and onto a plan provided by my employer. Two days ago, I picked up my first round of prescriptions from the new insurance. There were two, one I need to fill monthly and one I need to fill yearly (assuming I don’t need to use it in the year in between; Epinephrine is a weird drug as these things go). I paid $15 for each one.
In the past 20 months, I have been on 7 different health insurance plans. I have had continuous coverage, despite my constantly shifting life circumstances, though it was not always functional health insurance. Even with that, my out of pocket costs have passed the $20,000 mark. I used insurance money to cover those expenses, so I didn’t have to take on debt to receive health care.
And the really fucked up thing, is that I consider myself luck. I’m lucky that Jason’s employer had excellent health insurance when he died. I’m lucky they looked out for me by getting me on COBRA and I’m even more lucky that they paid for me to stay with my health insurance for so much longer than they were obligated to. (I can’t speak highly enough of how well they’ve treated me on every front. They are wonderful people and excellent employers.) I’m lucky that my work was flexible enough to allow me daytime hours to sit on hold for literally hours at a time. I’m lucky that I’m a native English speaker with a high level of education which allows me to parse the language in the insurance forms. I’m lucky I could leverage the car insurance money to cover my out of pocket costs of my medical care around the car accident and the fall out from it.
I consider myself lucky, that in our broken health care system, I only had to pay $20,000+ and the hours it took to chase down paperwork for the care I received.