When health care gets personal

Two things have happened in the last week that make me wonder how we got here.  I’m sitting here, typing away, and retyping every few keystrokes as my persistent, hacking cough overwhelms me and causes me to type on the wrong keys while I quickly try and cover my mouth.  Sounds attractive, right? Yet I can’t go to the doctor.  I am unemployed, and while I have health insurance it’s not the greatest plan in the world.  I only get to go to the doctor three times a year before I start paying out the wazoo for my visits.  I’ve already been to the dentist, have to have an annual checkup later in the year, which leaves me exactly one doctor’s visit to use at my discretion–in the next 48 weeks.

So is my hacking cough bad enough to go to the doctor now?  What if I get appendicitis? What if I break my wrist?  Then I’m up a creek later in the year because I don’t have the finances to cover a visit.  Sure, I could go to someplace like the Fan Free Clinic, which is a cause I support financially when I am able.  Or I could go to a Doc-in-a-Box where they are required to give you a prescription regardless of condition when you walk in, thereby incurring additional costs that I can’t cover.  It’s a vicious circle.

How did we get here?  How did we evolve from the kind, gentle, bespectacled man showing up at your door with a black case full of stethoscopes and miracle cures to the giant business that is the current health care system?  I know the easy answer is money.  Health care is a business, and it’s a guaranteed one at that.  People will get sick.  People want to get better.  People will pay in order to get better.  Businesses will charge more for a guaranteed service because they can, thus making a ginormous profit.

My stepfather, as previously mentioned on this blog, is a die-hard Republican.  Doesn’t matter if it’s a loony-tunes amnesiac running for office, if they are on the Republican ticket, they are going to get his vote.  He is a very smart man, one I respect highly, yet his blind faith in a party drives me nuts.  He will take any email, commentary, flier, or propaganda that crosses his path as gospel truth if it has the name of a prominent Republican on it somewhere.  His latest crusade is the current administration’s legislation for health care reform.  He claims it is the greatest hoax, second only to global warming, that is being spread by the demon Democrats in office.  He even had VOLUNTARY back surgery last year in order to correct a problem that even the doctor said wasn’t bad enough for surgery for the simple reason that he thinks anyone over the age of 55 is going to be left to die under the proposed health care plan.  Now I don’t claim to be a political analyst nor am I someone who blindly bats for the other party, but don’t you agree that’s a bit drastic?  I will freely admit that there are problems, and that there needs to be a solution.  It’s become a business about making money, not about curing people.  You can still make money at it, sure, but there is no reason for it to be what it has become.  I don’t claim that the new plan is the saving grace for mankind, I’m not that educated about it.  I need to research more, and learn more, before I can make that kind of declaration.  But at least someone is trying to make a change.

Which brings me to the second thing that has happened in the last week that makes me question the current system.  As I have mentioned, my mom is sick.  Not I-have-the-flu kind of sick, but sick with a freaky rare disease that only a handful of people in the world have.  A disease so rare that she can’t qualify for treatment programs at Mayo or Duke or NIH because not ENOUGH people have this disorder–they can’t make the research cost-effective.  And just to make it complicated, it’s a disease that affects each person differently.  It’s like saying two people have cancer–one could have a small melanoma on their arm and it’s taken care of in a doctor’s office and never thought about again.  The other is in stage-4 lung cancer, on the third round of chemo, going through radiation, and has no quality of life.  They both have cancer, but they have two very different stories.  That’s how my mom’s disease is.  There is no cure, there is no improvement, there’s just every attempt made to halt the progression to ensure that the life you have is worth the effort undertaken.  She will die from this disease and/or its complications.  I know this.  I have known it for almost ten years.  She’s about five years past the ‘expiration date’ that we were given, so it’s all bonus time at this point anyway.  You take each day you’re given and try to make the best out of all of it.

Yesterday, my mom was generous enough to follow me to the garage where I dropped off my car for repairs, then we spent a fun four hours running errands.  Mundane details of daily living, but it was a pleasant afternoon, and we had fun.  We hadn’t had a day like that in a while, and it was nice.  While driving around, she mentioned that she hadn’t taken one of her (many) drugs for about two weeks now.  I freaked out.  I wanted to know why.  Evidently her insurance doesn’t cover it any longer.  She and the doctor have filed an appeal, and she has requested the same from the doctor we saw at Johns Hopkins this summer, but we’re waiting for a result.  The insurance company says that it isn’t an approved treatment for her disease.  Um, hello?!  There IS no treatment for her disease!  Just an ongoing effort to keep that quality of life standard acceptable.  With insurance, the drug costs about $90 for three months.  Without, it’s $700 (minimum) for a month.  She’s been on this drug since March of 2008.  Sure, it has drawbacks.  Sure, it’s an unproven treatment.  It was actually an accidental discovery–it’s a common treatment for MS, and they noticed that it could have some benefit in reversing the progress of my mother’s disease.  In her case, it hasn’t done that.  What we think, however, is that it HAS kept the disease from progressing as rapidly as it would under normal circumstances, therefore allowing my mother additional time.  The problem is that when this particular drug is stopped, it has been known to kick the disease into overdrive, kind of like it’s making up for lost time.  It goes whacko and attacks everything.  Which isn’t good.

There are four major organs that need to work properly in order to live: heart, brain, lungs, and kidneys.  Okay, five, if you count the liver.  The rest are important too, but after years of listening to her doctors and living for creatine level results, those are the ‘big four’ in my mind.  And while she was telling me about this latest insurance disaster yesterday I kept thinking back to the words of her doctor from several years ago–that they could continue to work with it while the disease focused on her kidneys, but if it hit any of the other three (heart, lungs, brain) in any significant way, then they’d stop trying to help her because there isn’t anything they can do at that point.  If this disease kicks into overdrive, what is it going to attack next?  She’s already at the verge of kidney failure, is in danger of losing her eyesight if it grows in that particular direction, is possibly going to have a problem walking more than six steps in the near future as it is . . . and you’re telling me that this disease is about to move into hyperdrive?

I don’t have  a solution.  There are people much more educated, much smarter than I that are working on a solution for this current crisis.  But it’s not just a piece of legislation that might affect me someday.  It’s a personal issue.  It’s one that I care about.  It’s one that I want fixed, so that my family can live, and live healthy, for a long while.

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