A few weeks ago, I went to the doctor, because I was having flu-like symptoms, and I have asthma, which puts me in a vulnerable population when it comes to the flu. The clinic thought that I might have H1N1 (I didn’t), and so they busted out the full contagious flu protocol for me, which included making me wait in the parking lot in the car so that I could get a mask and enter the clinic through the back door. I felt rather guilty about all of this fuss when it turned out that I didn’t have H1N1, although I certainly had a virus, but that’s not actually what I want to write about today.
What I want to write about is how my experience with the doctor highlighted, for me, how broken the American health care system is. To do that, I briefly have to talk about my own situation, as a person seeking health care in the United States.
I don’t have health insurance. I can’t afford it, and even if I could afford it, most insurers wouldn’t take me, because I have pre-existing conditions like asthma which make me an unacceptable insurance risk. This means that I pay for all of my medical care out of pocket. (There seems to be a myth in this country that the Great Masses of the Uninsured are somehow sucking off the government teat, but in fact, that’s not the case. There are a lot of people in positions similar to mine who pay full price for their health care.)
I also don’t have a regular primary care provider. I get medical care at Mendocino Coast Clinics, which is a really great clinic with very friendly staff, and I actually usually see a physician assistant there when I need medical attention. When do I go to the clinic? Usually once a year, for my annual exam, because I have to get a pap smear to get a new birth control prescription. So, that’s one point of contact with a patient each year with a patient with pre-existing conditions which are basically not being managed, in which a care provider has to quickly try to intervene if a major problem is spotted. Intervention is complicated by the fact that I can’t afford things like extensive medical testing and referrals to specialists to explore something which “might be” a problem. Very rarely, I make another appointment, as when I thought I might have a serious influenza infection, because I recognize that if I don’t go to the doctor when I am kinda sick, I could get really sick, and that would be bad.
I am fortunate enough to be able to spend $80 now and then on a medical examination which might save me tens or even hundreds of thousands of dollars in medical bills. I am fortunate enough that when it became evident last year that another serious pre-existing condition I had required more aggressive treatment, I could afford that treatment. It cost over $24,000 over the course of a year, and it forced me to go to San Francisco to seek treatment (because it’s not available here), and I was forced to seek treatment under a false name, so that it won’t show up on my medical records, in case I ever want to even remotely want to think about getting health insurance. My experiences in treatment were, to say the least, not very enjoyable, for a lot of reasons, many of which are related to our health care system’s problems. I rarely actually saw the doctor “in charge of my case” because he was pressured to see way too many patients per day while also balancing tons of paperwork. I saw a different nurse each time, and experienced no continuity of care. I waited, often a very long time, even with an appointment, in heavily crowded waiting rooms. I had appointments canceled on me literally while I was driving to San Francisco (a four hour trip) with no sympathy for my situation. I had arguments with the hospital, the lab, the doctor’s billing offices about billing, double billing, and everything in between.
And, above all, I had to be very careful about making sure that records of this condition didn’t end up on my actual medical record, the one with my name on it, because if they did, I would never be able to get health insurance. Ever. I even debated whether or not I wanted to write about it here, and decided that I would talk about it without naming the condition, to have some plausible deniability in the event that I ever try to seek insurance. This paranoia plays a role in my annual visit to the doctor, because I have to say things without saying them, since it can’t go into my medical record. This makes it much more difficult to provide medical care for me. And for other patients like me; if you have to deliberately leave things out of a patient’s medical record for financial reasons, that’s 1. Insane and 2. Dangerous for the patient.
So, anyway, there I was, talking to the physician assistant about why I came in. She examined me, tested for strep, confirmed that I didn’t have flu, and then asked why I wasn’t using my asthma medication.
“Because it’s prohibitively expensive,” I said.
And that’s the only reason. I’m not taking a medication which has been prescribed for me, which improves my quality of life, which protects me from serious asthma attacks, because it’s too expensive. An expression of quiet horror crossed her face; here I am, a 20-something professional who seems on top of things and who seems reasonably responsible, who is not complying with her meds because she can’t afford them.
The stopgap solution? She gave me some free samples from the drug rep, enough for several months. Within days of restarting, I noticed an immediate improvement in my breathing. When I run out of the medication, though, I won’t be buying more. I can’t buy more. I have to balance numerous other expenses, and I’ve pretty much blown the health budget for the year (more like the decade) at this point. Like millions of Americans, I have to choose between eating and health care. Between paying the electric bill and health care. Between paying my taxes and health care. I may be theoretically middle class, but I am highly vulnerable financially, and my huge outlay on health expenses over the last years has wiped out anything I had which even resembled a savings.
This. THIS is what is wrong with the American health care system. Patients with asthma should not be relying on free drug samples to manage their condition. Patients with any chronic health condition should not be relying on free samples and the generosity of health professionals for care. Patients should not be forced to seek health care under a false name to avoid damaging their chances of getting insurance. Doctors should not be editing medical charts to avoid exposing their patients to financial harm. People should never be considering financial issues when they are making health care decisions.
People with less financial privilege than I have should not be putting off doctor’s appointments when they are sick because they can’t afford them/can’t get time off work/can’t get to the doctor’s office. Doctors should not be seeing patients with comorbidities once a year for a medical appointment which is not related to any of those conditions. Patients should be complying with medications they need to stay healthy. This? This is all about money. Money is what is wrong with the system.
People say that the solution is reform of the insurance system. But it’s not. Insurance has loopholes and cracks and people like me slip right through them. Those loopholes and cracks are always going to be there. The solution, by contrast, is to abolish insurance. To stop running health care for profit. The solution, as I have said time and time again, is nationalized single-payer health care, so that I can pay $5 to go to the doctor, and get a prescription I pay $5 for, and so can my neighbor, and so can everyone else across America. So that patients who need them can receive the appropriate referrals and workups without having to worry about cost, or whether or not the insurance company will pay. So that no one ever has to lie awake in this country wondering how they will pay for vitally needed medical care. So that when a patient isn’t complying with meds, a doctor knows the problem isn’t financial.
This system is broken. I’ve ranted about how it’s financially inefficient and prejudicial and shitty before, but I don’t think I’ve ranted about the way in which is damages me, personally. Readers may note that I usually identify as a temporarily able-bodied person, despite having medical issues which some people might consider disabilities. The truth is, as absurd as it sounds, I haven’t thought of things like my asthma as disabilities; I just consider them naturally as a part of who I am, and I have tended, in the past, to think that identifying myself as a person with disabilities cheapens the experiences of people with much more serious disabilities. After all, I don’t qualify for disability payments from the government, which has always been kind of my yardstick to determine whether or not I am disabled. But, of course, a lot of people with more serious conditions than mine also don’t qualify for such payments, illustrating that it’s the system that’s wrong, not me. And, of course, disability payments are pathetically woeful; if you are desperate enough to jump through the hoops enough to get government assistance, you are automatically among the poorest of the poor, because the sums they give out each month wouldn’t feed a dog, let alone a person.
And, you know, some of this may have to do with my own internalized and clearly fucked up attitudes about disability. I can shift for myself, therefore, I think that I must not be disabled. I fear the stigmatizing label of “disability” even as I actively fight against ableism. I don’t want to admit disability because it seems like a weakness or failing on my part, and I don’t want to be “a bother” when there are so many people so much sicker than I am who need help. People like me? We’re broken, but pretty easy to fix, in a world with a health care system which makes sense.
But maybe it’s time to start owning my disability status, to admit that being “kind of a person with disabilities” makes me a person with disabilities. Maybe it’s time for people to start recognizing that disability can affect your life in a lot of ways, and that my relatively privileged position doesn’t negate the fact that I do have disabilities. Indeed, it puts me in a unique position of having a voice to speak for a community which is largely erased. I have experienced personal and financial hardships because of disability. If I lived in a country with a functioning health care system, I, personally, would have a richer and fuller life. It’s time to take this argument out of the abstract, and into the personal, since apparently appeals to reason and rationality are failing.
