Monday, October 5, 2015

Getting Blood Without Trading A Pound of Flesh for It

As many of my friends know, I have chronic anemia.  Its cause isn't really known, except that I don't appear to be bleeding internally or destroying my own blood cells, so it's more of a "hey, keep an eye on that" thing instead of a "constant battle with death" thing.

The last two weeks, I've had what could be termed a health crisis, essentially caused by my body's tremendous adaptivity.  Oh, the body says, you figured out you should go to the doctor when you feel tired?  Well, let's make you the same level of tired at life-threatening low iron, as with your sort of average regular low iron, and let's improve our efficiency at the same time we develop asthma that explains all this extreme shortness of breath.  So instead of thinking, four months ago, "Holy cow, this is heavy-duty tired!" I've been thinking, "Yeah, feels like I oughta go see my hematologist before the end of the year."

A couple weeks ago, I made an appointment with a new doctor for the newly-developed asthma and recurring foot pain.  He ordered a routine iron test, which happens most times I visit a doctor and usually triggers a call a day later that says, "Yep, time to check in with the hematologist.  I called her office, and scheduling should call you today or tomorrow," followed by a month of infusions.  This time, it triggered a call that said, "You need to go to the hospital NOW.  You have critically low iron."  They didn't tell me on the phone, but there's a high risk of heart attack and stroke when your iron gets sufficiently low, because, well, there's no oxygen getting to important things like your heart and your brain.

I let the receptionist know I was leaving, and headed to the ER.  I spent the next seven hours or so getting a blood transfusion.  Starting with that first appointment with my doctor, I have had:

  • One doctor's office visit with lung capacity test
  • One iron test
  • One chest x-ray
  • One emergency room visit
  • Two blood transfusions totaling four units of blood
  • One bone scan on my foot to rule out stress fracture
  • One consultation at my hematologist's office, with blood tests
  • One iron infusion
  • One fitting for a supportive boot, including the purchase of said boot
This week I have another blood test, another hematologist consult, and another iron infusion, followed by two more over the next few weeks, and probably a prescription for a daily asthma inhaler.  Ordinarily, I'd be awash with money anxiety.  Many of these are expensive treatments (when my first iron infusion was not covered because of a 'preexisting condition' it cost me a thousand dollars out of pocket).  I know that a lot of people, including my own past self, would look at this list and despair.

I'm not, though.  At this point I have not taken a single cent out of my checking account, and it's not likely I will.  You see, not only do I have what I'm finding out is the Really Good Insurance, my company provides something called a Health Savings Account, with which most folks are familiar.  For those who aren't, I have a certain amount of money taken out of my pay and placed into a special account, and my company gives a lump-sum payment for taking the 'high-deductible' insurance plan -- a lump sum that conveniently covers almost that entire deductible.  I carry a credit card attached to that account, and what this means in practical terms is that I have a reserve of cash especially for medical expenses, that carries from year to year if I don't use it.

I don't say this to gloat over those who don't have this sort of safety net.  I say it because I want people to understand what the effect of that net has been.  Ten years ago, a call to go to the ER would have been greeted with, "I can't afford the ER.  How necessary is this?"  I'd be doing my best to struggle along with Urgent Care centers, wouldn't be able to afford a hematologist, and wouldn't *remotely* be able to afford the blood transfusions and iron infusions.  I don't make enough money that a $6,000-8,000 outlay over the course of two months every year is even a thing I can contemplate.  Every care decision, along the way, would have had to balance "How do I afford it?" and "Can I do without it?" against "I need to buy food and keep power on."  The safety net has left me free to think only of my health and the best course of treatment with regard to my healthcare decisions.

It's also drastically decreased my anxiety levels.  And, well, when you have a condition that increases your risk of a heart attack, and another one that affects your ability to breathe, anxiety can be a serious detriment to your health.  My only anxiety has been around trying to get the infusions scheduled so I can still attend an out-of-state wedding I *really* want to go to.  That peace of mind?  Directly contributing to the expectation that I'll get better.

I joke about feeling 'like an adult' because I have finally established that sort of safety net, combined with a savings account and a steady budget, so that a drop in hemoglobin doesn't completely derail me, but this is not "adulthood."  This is "what living in a developed nation should feel like for everyone."

This sort of security, this ability to make my decisions between me and my doctor, not me and my creditors, for my health is a human right and I believe that everyone deserves that right.  It should be available to the stay-at-home parent, to the entrepreneur starting a business on a shoestring budget, to the self-employed artist, to the fifth-generation farmers working their family's land.  You shouldn't have to take or keep a bad job based on the level of health security you need.

What we have now is an imperfect system.  Some aspects of the ACA, like the erasure of the 'preexisting condition' and the availability of healthcare exchanges, are great.  Others, including the penalties for people who don't buy insurance, are not the best solution for the problem because they still drag insurance companies into the mix and put some families into a pinch.

However, I look at it as a waystation stop on the road to real, fully socialized medicine.  I know that socialized medicine has its problems, but that none of those problems is "Do I go to the Emergency Room because I am having chest pains, or do I pay the electric bill next month?"  None of them is "Can I afford my meds *and* my food?"  None of them is having to do what I have done in the past: putting off essential care, even the basic doctor visits, because doctors get really angry when they tell you that you need a treatment, and you agree, but tell them, "I probably won't get it because I simply can't afford to."  And I've had more than one hear, "I respect your opinion, but I cannot afford to eat if I follow the course of treatment you deem essential," and refuse to treat me at all because I "just don't care about my health."

A lot of people I know argue that the problem is the 'high cost of medical care'.  I won't argue that's a serious problem.  But even if costs were half what they are, or a quarter, I could not easily have afforded the last week and the coming ones, and I'm relatively comfortable.  I get my infusions at a chemotherapy center.  I sit there and look at these people, many of whom can't work, who are spending tens of thousands of dollars a year in a direct and active battle with death.  Even at a tenth of the cost, most of them would have to give up treatment; 'reducing the cost of care' without keeping a safety net in place is not a viable, reasonable option.

Perhaps it's the self-interest of a chronic health condition that makes me an advocate for a centralized, single-payer healthcare system.  Perhaps it's the laziness of not wanting to have to individually bargain down the costs for every procedure I need or spend hours doing cost-benefit analyses of insurance programs, or a pessimism towards us ever having a fair system as long as it's partially run by profit-based insurance companies.  I don't know.

But what I do know is that I have something I want everyone in this country to have: peace of mind regarding my health options, and a life without the fear that a serious illness or injury will destroy everything I have built in my life and leave me stranded, dependent upon others, and hopeless.