By skyforbes 
Having been an IT contract person most of my life, I was pretty excited when the Affordable Care Act went into full swing, and it meant that I would finally have reasonably affordable access to health insurance. Of course affordable is always a debatable word — I was originally paying out about $200 a month for that insurance. But the job I had allowed me to afford it (if barely), and I was relieved to have it — and glad to know that some of my premiums were going to give people even broker than myself access to health care.
A few years before that, I had spent a couple of years as a salaried employee and had actually had decent health insurance. I immediately found a good GP and set out to trying to get healthier — knowing that there were chronic health issues in my family that I was likely dealing with myself, like arthritis. But joint issues got put on hold in a hurry, when the first diagnoses came back — Type 2 diabetes. My GP said that, based on my history and other factors, it had probably gone undiagnosed for a much as a decade, because the fasting tests almost never worked for me. It was only after the A1C became a common-usage test that they found it. I spent most of the time I was in that job dealing with bringing the diabetes under control. And I did. After my first A1C was through the roof, I didn’t have another A1C over normal levels for more than 5 years. Recently my numbers have been eeking back into pre-diabetic levels, and I’m working with my doctor on that. But it was a relief to be told that my diabetes was in remission, right after I was laid off, and lost my health insurance.
I was working freelance when the Health Exchange Marketplace went active, and I was one of the first people to sign on — meaning I was one of the first people to deal with all the technical issues they had in the beginning. But I worked with them and got it all figured out, and was thrilled to have a functional BC/BS policy the beginning of January. But when my hours were cut dramatically later that year, suddenly the insurance wasn’t remotely affordable. So I thought I was back to only seeing doctors when I was desperate enough to go a clinic or the ER. But I found out, by some luck, that I now made little enough income to qualify for Medicaid under the new guidelines brought in with ACA. Even better, I thought! I could still keep working on reigning in my health issues, without premiums and co-pays.
And overall, I have to say I am still very lucky to have qualified for Medicaid when I did, especially last year when I had my first mammogram and they found something. The mammogram led to an sonogram, which led to a biopsy. I don’t know what I would’ve done, if I’d had to worry about deductibles and co-pays during that mess. Fortunately they ruled out cancer — though they still haven’t exactly determined what I do have, because the biopsy results didn’t tell them definitively if it was a fibroadenoma or a phyllodes tumors. I get my second mammogram next week (third if you count the one to insure the biopsy tag was in place), and with any luck they’ll say that whatever the growth is, it’s not gotten any bigger and there’s still only the one.
The Breast Health Clinic and surgeon I am seeing regularly to follow up on these issues, are both located in the same hospital, which is located 10 minutes from my house. Why I’m mentioning that, will be apparent shortly.
But when it comes to my other health issues, the Medicaid has been as much a headache as any help. When pain and mobility started to become a big problem, back in 2015, my GP at the time decided to have me see a rheumatologist. No big deal I thought, with my family history of arthritis and bursitis it was high time I started trying to treat the joint and other body pain I had dealt with my entire adult life. Then I found out that the nearest rheumatologist that would take Medicaid, was in Peoria, about 100 miles Southeast of the Quad Cities metro area — a border community where I’ve lived my whole life, about half of which is in IL and half of which is in IA. The entire Quad Cities is about the size of Chicago proper, and has a population of about 400,000 people. So while it’s rural-adjacent, it’s definitely not rural. I couldn’t believe that there wasn’t a single rheumatologist that would take my insurance, in the QC — though even after investigating doctors on the Iowa side of the QC, it turned out to be true. So I resolved myself to driving 1.5–2 hours for every appointment with my rheumatologist.
At that time my GP was actually one of two doctors who ran a residency clinic in the area, so it was actually residents I was seeing, and then the main doctors would sign off on prescriptions and the like. When the rheumatologist diagnosed me with not only arthritis and bursitis, but also fibromyalgia, and later bone-spurs, I decided it was time to get a permanent GP who could genuinely function as the “primary care” coordinator I needed. So I started making phone calls and doing internet searches. You can imagine my frustration when it turned out that every single PCP eligible doctor in the area, who would take my Medicaid, had a wait-list for new patients that was 4 months or longer. So finally I decided I would learn from the earlier debacle, and I started looking for doctors slightly out of town.
When I finally found a viable GP, they were in Galesburg — about 50 miles South of the Quad Cities. Sure, it’s still a bit of a pain to make that drive — especially last summer, when I had to make the trip multiple times in a few weeks , thanks to a twisted knee and a having been bitten by a bat — but at least it was less than an hour away. I had to switch GP’s this year, because the previous one no longer qualifying as a PCP according to Medicaid, but I found another in a clinic right next to the original so it wasn’t too much of a pain — though the search for him took days.
Between the pain I’m dealing with, my increasing mobility issues, household problems and the breast cancer scare last year (their original BI-RADS score was 5 so it was a real scare), I have been dealing with ever increasing depression and anxiety over the last few years. I decided it was time to get mental health help, but I really didn’t want to go back to the local mental health clinic, where I would have to see an LPN and a therapist separately, because the therapist couldn’t prescribe medications — especially when getting in to see either of them involved weeks of waiting. That was over a year ago, and I have yet to find a psychiatrist or psychologist remotely within 100 miles of my home. And I have looked. I’ve spent days searching clinics in every community in this part of the state, making phone calls, trying physician directories, and so far I’ve had zero luck. Right now I’m managing by being part of a research project out of a college in Chicago, doing remote CBT therapy over the phone. It’s helpful, but not permanent, and isn’t enough to really address my needs. But I keep searching for better options.
And then, a few days ago, my saga began again. I have been meaning to start seeing a dermatologist on an annual basis. I have tons of moles (over 100), which makes me a high risk for melanoma. I did have a skin cancer scare when I was 19, when a mole in a very intimate part of my body changed black and grew bigger. It turns out the flesh under the mole had somehow been punctured and what I was actually seeing was a blood clot under the mole. But it made me pretty conscious of my risks. I also have a ridiculous amount of freckles and freckle-patches, skin tags and intermittent psoriasis. But I’ve dealt with all these issues my entire life, so even though regular trips to a dermatologist are probably warranted, I didn’t consider it a high priority at the time.
However I now have a few moles that I’m a little worried about. There is a tiny very black one that has shown up at the bottom of my neck, a long time one on my forearm has started turning darker in the center, and one on my chest has developed multiple shades of brown and irregular edges. Sure, it may be nothing, but if there’s anything to be learned from my ever-expanding medical chart, it’s that preventative medicine is worth the effort. So I started search for dermatologists. Guess how much fun that was?
After a couple of days of searching everywhere within 200 miles in every direction, I found a dermatology clinic, back in Peoria — I figured maybe I can schedule meetings there and with my rheumatologist at the same time and save a little driving. They weren’t in network, but would take my insurance with a referral. So I emailed my GP and got one. Today, the referral office for his healthcare network called me. It turned out the clinic I’d originally looked at had a one year long waiting list to see new patients. But yay, he found me another clinic, also in Peoria, with only a month waiting list — bizarrely affiliated with the main medical center in the Quad Cities and two blocks from my rheumatologist. And he told me, those are the only two dermatology clinics in the entirety of Central or Northwest Illinois, that take Medicaid. Which basically means most of the northern 2/3 of the state, that isn’t part of Chicago. He also told me, that the reason that so few specialists in the state will take Medicaid, is because they don’t pay doctors nearly enough, when they pay at all.
So let’s recap. I live in a major metropolitan area that is big enough to have a AAA baseball team and an international airport where Airforce One lands a few times a year (more in election years), in the 6th most populated state in the country. I am a person with multiple chronic health and chronic pain conditions, though thankfully I am both capable of driving and have a compact (fairly fuel-efficient) car. On a given year, I have a minimum of 8 doctor’s appointments — though more commonly it ends up being 10–12. And if I’m lucky, and I can time my rheumatology and dermatology appointments together, I will still drive over 1000 miles in the next year, just to see my doctors. And all because the state of Illinois is not doing enough, to make sure there are basic specialist medical services, covered by state insurance, in large swaths of the state.
Take a wild guess how much those numbers feed my depression and anxiety — not to mention the physical pain involved in all that driving. And in the winter, double those estimates. No one who knows anything about the Affordable Care Act thinks that it came close to solving all the medical access problems in this country. But at the same time, anyone who knows anything about the problems with medical access in this country can not rationally support any legislation that involves a step backward from the ACA, to an even more restrictive and less accessible system. To support such changes is, to my mind, monstrous. I don’t think it is in any way hyperbolic to say, that the two biggest impediments to adequate quality of life in this country, are access to medical care and pay disparity. And without actual forward momentum — in other words, progress — things are only going to continue to decline.