It never fails to evoke an emotional response, those last few years. Nothing makes me have a lump in my throat or watery eyes faster, in fact, than telling this story. It's a story that has been told through the form of posts on this blog here, but that is one of my only outlets for my story. I couldn't tell a lot of people in school because I was supposed to have health insurance throughout all those years, or health insurance in the state I was living in. My struggles therefore had to be a tight-kept secret to many.
I just got off the phone with my endo office, canceling my appointment because I owe a balance that I wasn't told my school's insurance wouldn't pay, and I'm worried that since I lose my school insurance next week, I'll be responsible for it and the full cost ($700) of my endo visit. Not having insulin is a stress, yes, but so is having $1000 in outstanding medical bills. This scenario encapsulates a lot of my struggles throughout the year into one big nutshell:
Not having guaranteed access to medicine is stressful. But so is having more medical debt than you can pay.
It's easy to be a healthy person and say, "you should just bite the bullet and pay it. I mean, what can be more important than your health?" Or, "Just take out more loans... worry about paying them later."
That's great, but unless you're the one saddling yourself with the thousands of dollars in debt - you can't understand the pit of despair that feels like. I've tried for years to save a nest egg, put away in case of a rainy day. It's come in handy. When I wrecked my car, bought a new car and that one died too. Car troubles over the year. Moving to grad school. The $6000 emergency room visit. Not being able to work as much in grad school. It eases my troubles to know I have money put away just in case of these things, even if they aren't fun expenditures. But it also means I've mindful of where I put my money, and I don't like having outstanding debt from my last two doctor's visits, let alone the debt I would have had from years of these visits. I guess that's something I kept in mind as I lived this struggle for the last few years.
When I went to Wesleyan, I had Florida Medicaid. It was the only thing that would pay for my doctor's visits and my insulin monthly. My endos were very understanding of me only being able to make appointments in between semesters (two visits a year). They always filled my prescriptions and I could email them my glucose logs. My control was good. Wesleyan didn't technically allow this insurance because it wouldn't cover me in Georgia. But they didn't understand that I couldn't be a resident, because students with student addresses can't be residents, and they didn't let students live off campus, so I had no choice. I could buy their insurance, but then I'd lose Medicaid and their insurance didn't do much in the way of covering the expensive prescriptions or specialists I needed for my condition. Student insurance, as it may not come to surprise you, is very subpar. I somehow managed to enter the insurance information in the system in a manner that they approved of, saying I had Medicaid but not specifying the state. I banked on the fact that Medicaid never answers the phone, so if they tried to confirm that I had Georgia Medicaid and not Florida, they'd never actually talk to a human being unless they wanted to wait 2-3 hours.
And it worked. For 3 years, I was able to keep my insurance. I was very young; I moved to Georgia when I was 17, and while I lived in fear at 18 that they'd take the Medicaid away, they actually let me keep it until I was 21. And my endo always prescribed me full boxes of 5 pens each of insulin - I was able to stockpile all of the extra throughout the years.
Time goes on, and I move to Atlanta for graduate school. I'm 20, and I know I'm going to lose my insurance soon. I go down for one last visit. I'm too old to see my pediatric endocrinologist now, so I have to make a visit with another endo. There is only one in the entire Orlando area that takes Medicaid. It's understandable; Medicaid hardly, if at all, reimburses physicians. It's basically a charity visit. But I still need to see someone. I make an appointment with a Dr. Lorenzen 5 months in advance because that's the soonest I can see her. It's August 2014 when I drive down to see her. The first thing she does is ridicule me. "I can't believe you don't go see anyone more often... I don't even know why you bothered to come. You're going to be one of those noncompliants." It hurt my feelings a lot. I tried to explain to her that I was too old for the pediatric endo and she was the only one that took Medicaid and it took 5 months to get an appointment to see her. I tried to explain that I could only make the 6 hour trip to Florida between semesters to see the doctor. She didn't listen. She just ridiculed. It had been since December of last year since I'd seen anyone. My A1C was 7.5%, which was a little on the high side, but considering I hadn't seen anyone in almost a year and had gone through a brutal breakup with an ex boyfriend in February, who was still currently stalking me and causing a lot of stress (which raises blood sugar levels), I though that was pretty damn good, thank you very much. I'm a woman that does what she has to and knows how to survive.
She only gave me one month's worth of insulin because I was apparently an awful diabetic and she didn't want to "reward" my noncompliance. It was fu**** up. And then she sent my bill to a credit agency for collection because she didn't file the Medicaid right anyways, so I was stuck with the bill. I never paid her, out of principle. She was the worst doctor I ever saw.
But that was it. From that moment on, I wouldn't see another doctor until February of this year. The first semester, I did the same thing I had done at Wesleyan to keep my Medicaid through October when I turned 21 so I could have that last visit. Insurance was $900 a semester at Mercer, which meant I would have to take out a separate loan just to pay for it, since it exceeded the federal loans I qualified for. In addition, it didn't cover my prescriptions past $500 per semester. My insulin cost more than that per month. The insurance, in short, was essentially useless for me. I even sat down and did the math with the head of my PT program and we both agreed it was a very poor option for me.
I made a decision. I counted the boxes of insulin I had saved up in the fridge. I did the math.
And I had enough to last until May 2017. Sure, some of it would be expired, but as long as it wasn't cloudy, I was going to use it.
And until Fall of 2016, that it what I did. In summer of 2016, Mercer finally caught on and realized I 1. Didn't have Medicaid anymore and 2. Florida Medicaid wasn't considered adequate coverage in Georgia and made me get their insurance. It was fine; I'd been on this ride long enough. To supplement my dwindling supplies, I was having to resort to charity and the goodness of others to give me things I needed. It was getting harder. I needed to see someone. And that brings me to my endo visit in February (I have a post on it on my blog here).
Has it been easy? No. I heard some of my classmates talking shortly before we graduated about being worried about not having health insurance over the summer. I don't downplay that that may be stressful for a lot of people. It's just... if that's stressful, think of what it's like to have a chronic illness and not have insurance for over two years. It's been a game of luck, a game of relying on the goodness of others, and a game of quite frankly, testing my mettle as a human being bent on survival. I may have made things unnecessarily hard on myself, but frankly I'm not really sure I did. I would have spent thousands on insurance that did me no good and then still spent thousands on insulin not covered for it, which meant I would have just used my insulin supply instead of buying new stuff anyways. It's been hard, after my supply has started to dwindle, but I've been very thankful to have help from people in all sorts of places. It's been hard working every single weekend in a program that goes just short of forbidding you to work in the program because of how academically rigorous it is. But I did it, and I did what I had to to survive and make sure I had what I needed to live. I juggled work, school, and illness and I came out with my degree. And yes, it meant I didn't get the best grades. I wasn't the most involved in school activities. But I survived.
This is the reality of the American healthcare system. It has forced me to get insurance that doesn't cover what I need. It has still failed to make my insurance affordable, because even looking into other options, they don't make subsidies available to students who don't claim income above a certain level. And insulin prices keep raising simply because companies can raise the price - even though Banting, the man that discovered insulin, sold it cheap to allow people like me to have access to it back in the 1920's. This is what having limited access to insurance and insulin is like. And I guarantee you that you have, or you know someone, who has experienced something like this too. Making the choice between savings or medicine, debt or healthcare, going with or without. Not being able to do what's best for your health not because you don't want to but because it's a cost benefit analysis that costs you dearly either way. Getting, sometimes, blamed or ridiculed by healthcare practitioners that don't seem to understand it.
And while this battle is (hopefully) going to be over for me when I pass my boards and get to start working at my job with benefits, I hope to God that this changes someday. Because the things I have had to do for survival, quite frankly, sucked ass. And I would never wish those struggles on my worst enemy. No one deserves to go through it, but we with chronic illnesses, we who are sick, we do. And you all need to know how hard that struggle is.
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