Because I am choosing my battles today and everyday, I am choosing to write about an aspect of the healthcare system that drives me crazy instead of stressing myself out trying to fix it.
In a perfect world I would see my oncologist once per month and there I would get my blood drawn, get the results, get my monthly injection, and not have to deal with going to the doctor again til next month. Except for a scan here and there or a visit with the surgeon.
My health takes my first priority, yes. But i’m not just a cancer patient anymore like I was when I was recovering from my surgery earlier this year. I have other shit to do. I am a liver. Right now, for example, I have finals. I can’t spend all my time on the phone trying to change and make appointments and get blood test results.
As you might have surmised, this is not a perfect world because just this morning I found myself sitting in the waiting room of my endocrinologist’s office waiting to get my injection. Just like last month at this time. It did get me out of the house well before 9 a.m. on the Monday after Thanksgiving–which was good for the week before finals. Yes, I usually only have to wait a half-hour or so. And I like the nurses. And the shot itself only takes about 15 seconds or so, but it takes time to mix it and let it soak and fill the syringe… it’s an unpleasant shot. But I guess what really bothers me about the whole ordeal is if I didn’t call each month to set up the appointment, no one would know the difference. No one would call and find out why I didn’t get my shot. No one would care. If I told my oncologist, he would care, but he wouldn’t know whether or not I get my shots independent of me telling him.
Every month I put off calling to make the appointment to get the shot because every time I call they’re confused about why i’m calling: “Did someone call you about making an appointment?” “How do you know you need to come in?” “Wait–you bring the shot yourself?” I keep track of this myself because no one else would keep track of it if I didn’t. And I bring the shot myself because if I got it from the office my insurance wouldn’t cover it and i’d be stuck paying–what was it?–$12,000? Something astronomical.
This is the medication–well, a different formulation of the same medication–that at the beginning (last year at this time) was so important for me to start taking that I had to inject it myself, into my belly, three times per day. It was awful. But it helped control my symptoms for a little while.
Now, I have to practically beg to get it–I can’t very well inject the monthly shot myself. It goes in the butt, with a giant needle; the consistency of the medication is like wet sand, and it burns. Ow. The mail-order pharmacy calls me every month to set up a delivery for all my chemo drugs, including this shot. Why can’t the doctor’s office–or the oncologist’s office–call me when I need a shot or call me when they need to tell me important blood test results without me having to hound them?
Well, the answer, according to my health care policy class, is health insurance reimbursements. Doctor’s offices don’t get reimbursed for things like phone calls and emails and patient maintenance, so they don’t do it. Or, they can’t afford to do it. My oncologist’s office already has 5 people employed who deal with insurance–they don’t get reimbursed for those people’s time either. And the nurse practitioner doesn’t get paid every time I page her for my blood test results. And my oncologist doesn’t get paid for the time he spends on the phone getting my scans approved. Last time, he told us this was a way for insurance companies to keep costs down–because getting a busy oncologist on the phone with a health insurance doctor is no easy feat. So less scans get ordered because of it.
On one hand, I feel like all these doctor’s offices make enough money. Haven’t I already paid them thousands on top of what my insurance has paid them? What’s a two-minute phone call worth, anyway? But on the other hand, if i’m thinking like an economist, i’m thinking: the market responds to incentives. If health insurance companies were to reimburse for call time and email time and maintenance time, more doctor’s offices would start doing it. And in the long run, it would probably bring costs down. If I wasn’t so diligent about doing everything i’m told to do and getting this shot every month even though they make it difficult, I probably wouldn’t be doing as well as i’m doing. Which would probably mean more trips to the hospital, more appointments with my oncologist, and more blood tests, which are all costly.
There are lots of chronic conditions out there–diabetes being one–that are fairly straightforward to treat, but it’s up to the patient to (in the case of diabetes) take the insulin (for type I) or the pancreas-stimulating medications (for type II), eat right, and do whatever else their doctor tells them to do. Pancreatic neuroendocrine cancer is not straightforward to treat, but you get the idea. Diabetes requires maintenance or it gets worse. Doctor’s offices can’t help with the maintenance–except in the form of a monthly appointment at the most–because they don’t get paid for it. They can’t afford to hire someone to work with patients to help them fit diabetes care into their lives.
For my healthcare class we read an article about a few diabetes management clinics that opened up in New York in the 90s. They helped patients fit diabetes care into their lives. And the patients loved them. And the doctors loved them, because they were helping patients dramatically. But financially, they failed miserably.
This doesn’t make any sense.
Writing this post has made me feel lazy and want to choose this–this care management and follow-up–as one of my battles. But that involves changing the health insurance reimbursement for such activities and trying to get doctor’s offices to hire people to do this, which I wouldn’t even begin to know how to do. I would also like doctor’s appointment consolidation to be one of my (smaller) battles, but I may lose my resolve once I spend 15 minutes on hold and the person who answers doesn’t understand what i’m trying to do.
So, I guess i’ll just stick to trying to get dates with celebrities for the time being. And, you know, taking my chemo and being nice to my body. And somehow beating cancer. I don’t usually like to see my cancer as a battle–I prefer the marathon analogy–but for this post I will make an exception.
And finals can be one of my battles too: because it’s that time of the quarter again.