Health Care Reform

It’s hard for me to discuss health care reform because I take it personally.  VERY personally.  So much so I ruined a dinner party a few months ago screaming at my host.  He thought we were having a political debate.  I thought we were talking about my life.  He spouted off sound bites he’s heard on TV.  I gave him actual examples from my own reality.

My husband was laid off at the time, so I was shocked that this guy didn’t get that his friends, the unemployed guy and his wife with the progressive neurological condition, were shitting themselves daily wondering if they were a year or so away from financial ruin.  I thought with a real world example sitting right in front of him, he’d at least take a step back and think about the issue from a different angle. He didn’t and when I realized he wasn’t going to it was if a crazy person took over my body.  I was so offended, so angry, so shocked by what I perceived as a complete lack of compassion and frankly, high level reasoning skills, I lost my freakin’ mind.

Needless to say I’ve kept my mouth shut since then out of fear that I’ll either alienate my friends or piss of my “I’m the diplomatic one in the  marriage” husband.  But since we’re coming down to the wire on this issue, I thought I’d do my part and chime in one last time as a person that needs health care to not only survive physically and financially but also as a professional that works as a health care provider.

Understand I’m talking about health care REFORM.  Not free health care. Not,”Whoa is me, I wish my government would take care of me,” health care. Health reform. Re-Fucking-Form.  A damn verb that means to revamp, improve, reshape, remodel and reorganize something.  That’s what this is about to me. Because if you think that health care is fine as is – you’re either not paying attention, don’t work in a health field or don’t have a bulls-eye  on your back due to a diagnosis.

If however, you agree the system is broken but you don’t like the proposals in place to reform it, that’s an entirely different story. So this post is dedicated to the uninformed out there, i.e., the lucky ones that have jobs and insurance and no illnesses that would untether their ability to continue having jobs and insurance because besides being uninformed, you’re also a lucky son-of-a-bitch.  But remember, luck tends to run out.  Don’t say you weren’t warned.

I want health care reform in this country for a couple of reasons.

  • I find life as well as quality of life, very appealing thus I’m trying to avoid dying a slow and torturous death from Multiple Sclerosis.
  • To live long and prosper, I need to manage my disease.
  • To manage my disease I need to inject expensive drugs into my body.
  • I can’t afford these drugs without insurance.
  • Due to my pre-existing condition, I can only get health insurance if I work at a place that offers a group health plan.
  • I can only get into a group health plan if I work full time in the field of speech pathology.  In other words, as much as I love teaching yoga, it’ll never provide me with health benefits or pay me enough to buy them.
  • I have no problem working full-time.  I just don’t know if I will always be physically able to work full time or cognitively able to do my job well.
  • Therefore if at some point I don’t have a spouse and I can’t work a full time, professional job, I want access to health insurance that I can purchase out of pocket.
  • I’m not asking for a government hand out. I don’t want the government to pay for it.  I simply want access to it, in the event that I need it.  I want reforms in place that guarantee my ability to buy insurance should I lose it.
  • I need this access because due to my pre-existing condition, I can’t afford the premiums charged for folks like me that want to buy their own insurance.

What happens to me if health care reform doesn’t pass?

  • Well if my husband never leaves me, dies, or loses his job, nothing as I’ll get my health insurance through him.

What happens to me if health care reform doesn’t pass and my husband leaves me,  dies or loses his benefits?

  • I’ll work full time and provide myself and family with benefits.

What happens to me if health care reform doesn’t pass, my husband leaves me, dies or loses his benefits and I’m physically unable to work full time?

  • I’ll do my best to work enough hours to pay the $36,000 a year for the drugs out of pocket as well as all of my other expenses.
    • When you lose your insurance, you’re charged full price for medical services, not the discounted rate that medical professionals are forced to charge in order to accept insurance.
    • Because no one advertises their prices, you spend a lot of time on the phone investigating cheaper alternatives when you need medical services.  You can’t go to the web and pull up the cost of CT scans at various radiology clinics, for example.  They only list what insurances they accept.
    • Certainly you can budget for known costs like yearly physicals and blood work, but if an emergency arises, you could be completely out of money and lose everything you’ve worked toward.
    • Keeping the above in mind, if that means selling the car, moving to a smaller house and cutting back on my lifestyle, no problem. I’m willing to make those sacrifices to have money to pay for my medical bills.  But I will ration my services and micro-manage my doctor.  For example I might not go into see him at all and instead save the visits to put toward my yearly MRI.  But if I’m in a serious accident, we could lose it all anyway.
  • If I can’t afford a year’s worth of drugs, I’ll take my drugs every other day and only need an extra $18,000 a year, or take them every 3rd day for $12,000…you get the idea.
  • But under no circumstances will I take down my family financially.  I won’t take from the retirement or college funds to support my drug habit.  My daughters will get weddings and college educations and all of the money my husband has busted his ass to save since the late 80’s wont be injected into my body.  Unless of course, that unexpected, serious accident occurs.
  • And if in the end, if I can’t afford the drugs and my MS gets worse, hopefully I’ll make a profit from selling my house with 20 stairs scattered on two floors to move into a wheelchair accessible ranch.  That’s if the conversion van with hand controls and an access ramp doesn’t eat into all of my profits.

What happens to you if health care reform doesn’t pass?

  • Well, the $36,000 I must spend on my drugs doesn’t get put into the economy.
    • So if you work at Target, Kohls, Starbucks, Volt, The Common Market, Safeway, Giant Eagle, Barnes and Noble, Borders, Cafe Nola, Moxie, Zips Dry Cleaners, Netflix, Westview Regal Cinemas, Chick-Fil-A, Five Guys, Zipani, Get Go, Ruby Tuesdays, The Farmers Market, Home Depot, Whole Foods, Trader Joes, Vibrant Art Wear, Retro Metro, Hollywood Video, Sol Yoga, Bed Bath and Beyond, Sports Authority, Carousel of Beauty, Mountain Spirit Yoga, The Tasting Room, Firestones, CVS, RiteAid, The Dutch Plant Farm, Ye Old Spirit Shop, Hillcrest Liquors, Kmart, Panera Bread, Cold Stone Creamory, Nails II, Pretzel and Pizza Creations just to name a few – don’t expect much of my money, because I’m going to need every penny for my family’s drugs, doctor visits, tests, and treatments.
  • If my MS gets really bad and I can’t work and I have no spouse to help – me and the kids start getting assistance and health care through the government that you’ll be paying for – so thanks in advance for that.
  • If my MS gets really bad but I’m still employed and have health benefits, then you’ll be at risk of receiving speech therapy from someone that’s physically fatigued, in pain as well as mentally unable to do parts of her job.  My employor wont be able to fire me and I wont be able to quit, so I’ll keep doing my job and hiding my deficits as long as possible and hopefully you wont be the person that receives sub-par speech services since you’re probably dealing with something just as bad as MS like a stroke, Myasthenia Gravis, or a traumatic brain injury.  And since you only get so many speech visits per your insurance, hopefully you wont waste them with a speech therapist suffering from brain fog, anomia, confusion and God-forbid, incontinence.

Makes me wonder how many people with significant health problems do this every day?  Maybe your cab driver has macular degeneration and no peripheral vision when he takes you to your destination. Or your surgeon with Parkinson’s that’s performing your laparoscopic procedure.  Hey, it’s tax season.  Have you met with your accountant yet?  I sure hope he doesn’t have early onset Alzhemeier’s that he’s trying to hide.  Or your electrician with chronic pain that’s re-wiring your house. I’m sure the pain wont get in the way at all with his ability to do his job well and to code. Or your roofer with vertigo that you just hired to re-shingle.

  • I don’t honestly believe that people choose to be unethical with regards to the services they provide.  I think they’re forced to be unethical to provide for their families.  I’ve never thought about it before, but now that I have a progressive condition, I wonder, what lines would I cross to keep a job? How many people are out there, crossing ethical lines, bending the rules or hiding their medical problems just to keep their benefits?  I’m guessing it’s gotta be in the 10’s of thousands.  Think about that the next time you board a plane.

Which brings us to the other ways that you’ll get screwed if health care reform doesn’t pass.  Health care is all about productivity and in that quest for productivity, lots of unethical things happen.

  • A friend of mine told me that at her last out-patient speech job, she had to be 90% productive.  Meaning she had to be able to bill insurance for 90% of her 8 hour day.  If her productivity went below 80%, she was reprimanded.  Thus her employer came up with lots of creative ways to document and bill for things.
  • Other professionals I know have to dock themselves hours that they are scheduled to work but aren’t involved with direct care, because the 30 minutes between patients is not something you can bill the insurance companies for.
  • Others are asked to bill for things that aren’t quite ethical.  Like billing for cognitive therapy when your patient has a language problem.  Just because a patient sounds confused doesn’t mean he’s mentally impaired.  Often the person can’t understand what it being said or formulate a proper response due to a language deficit.  So you work on language and bill for that, not lie and say that they also have a cognitive problem.
  • Truth be told, patients that used to spend a week in a hospital post stroke are lucky if they are there a few days.  Those that used to receive in-patient rehab for a couple of months are lucky if they can stay 3 weeks.  Out patient benefits that used to allow a couple visits a week for 3 months, are down to 1 visit a week for 3 months.
  • This affects you because studies in  my field are showing that intensive therapy can produce gains several years after a stroke.  You think insurance companies pay for intensive speech therapy (insert laughter here) 3 years after a stroke?  Hell they won’t pay for any therapy 3 years post stroke.  Whatever gains you make after you reach the maximum insurance visits that your insurance company allows, are yours to produce on your own, unless you’re wealthy and can afford to pay out of pocket.  Thus many patients never reach their potential or fully recover because insurance companies limit the number of sessions they can receive.

So as you can see, my desire for health care reform, although personal, is a very linear, logical argument.  Its about a person’s earnings being able to flow through the economy instead of only being spent on full price medical services.  It’s about millions of people that are marginalized and backed into unethical corners for fear of losing their job and their health coverage. It’s about the fact that anyone can wake up one day and even though they’ve done everything right can, due to a stroke of bad luck, lose it all.

I’d love it if we were all simply compassionate and wanted everyone in this country to have access to health care and worked together to make it a reality in the best possible way for everyone.  But that’s never going to happen.

Because in the end it’s about politics and bullshit and games and leverage and sound bites and power.  Because apparently if someone’s inner Christian thinks compassion, their inner conservative, whispers, “socialism” in their ear.  Because even though Wall Street showed us only 2 short years ago that greed always trumps common sense and ethics, many still believe that if left alone, the health care industry will fix this mess on their own.  Because even though insurance companies have had decades to create a product that uninsured people with pre-existing conditions can afford to purchase, they haven’t needed to, so they haven’t done it.  And since the two industries involved make money in completely opposite ways (one if you get sick, the other if you avoid getting sick) healthcare doesn’t follow the supply/demand theory of economics that normally determines these things.

But hey, what do I know?  I’m just trying to manage a disease without taking down my family in the process.  Because in the end I can do everything right, follow every rule, do my job in the most ethical way possible, save before I spend and plan ahead for our future and I could still succumb to this disease and lose it all anyway.

We tell people that if you come to America and work hard you can have and be anything you want.  That’s a lie.  It’s based on luck.  If you are unlucky enough to get hurt, injured or diagnosed – you could lose it all – doesn’t matter how damn hard you work and save.

So yeah, I take it personally.  Very personally.

Wouldn’t you?


13 responses to “Health Care Reform

  1. Damn Girl!! You’re just the life of the party now aren’t you?

    Wishing you well.


  2. Oh by the way, rememeber how we talked about the Pruces and the Raleighs getting together for dinner at Natl Harbor?

    That’s off.


  3. This post says it ALL.

    Congress needs to read it.

    I tweeted it.

    • WOW thanks. I’ve never been tweeted before. Or did you twit me? And now that I wrote it like that, I’m thinking you should’ve at the least, taken me to dinner first and I should be enjoying an after tweet cigarette or something. 🙂

      It’s a long one, but I needed to get it all out, so that the next time I’m at a dinner party, I can just say, “When you’ve read my post, then and only then, can we have this discussion”. It’s too much to talk about over wine and cheese. People don’t realize that all of this is inside my head all the time and that’s why I get so damn angry!

      I let you know if anyone from Congress calls. Actually, now that you said that, I know a Republican Congressman – I’ll send him the link – thanks for the idea.

  4. I’m late on this (because it’s passed), but I just wanted to say thanks for sharing this.

    I’m surprised, sometimes, at the lack of compassion and reasoning that people display surrounding this issue. If one is displeased at the WAY we have gone about health care reform, that’s one thing. But to read stories like this and still not believe that we need(ed) serious and immediate reform is cruel and illogical.

    I hope you’ll be able to get the care you need AND take care of your family. Every American deserves just that.

    • Thanks for commenting! Actually, I’m very lucky as my disease hasn’t progressed much at all and I’m able to work full time if need be – so that’s a relief.

  5. I completely understand your situation and I am all for HCR, just not THIS reform that has now been shoved down our throats. They could have made so pre-existing conditions could not prevent obtaining healthcare, they could have stopped the pharmaceutical companies from charging $100’s on what takes pennies to make, they could of put caps on premiums and medical charges. They could have done all of that, without the rest of the BS they added. Like free health care to illegal’s, higher taxes for those who already pay the most in taxes (which will only cause us to have to pay higher prices to cover their taxes), and the list goes on to include things which did not pertain to health care. It sickens me what our Government has once again done. Instead of making something better for all, they’ve made it better for a small % and worse for everyone else. I’m glad you can now get insurance (well in 2012 or was it 2014?) without the fear of being turned down, that is awesome, should of been a standard YEARS ago! But what about the rest of it?

    • You say that it only made things better for a small amount of people. That confuses me – considering the number of folks that get diagnoses daily (12 million a year from cancer alone) I’m not sure why you wouldn’t see this as a safety net for the majority, not just for those of us already diagnosed with something serious. I’ve heard of people losing their insurance due to a UTI being considered a pre-existing condition. I’m glad that particular loophole has been dealt with for everyone’s benefit.

      Also, in my post, I talk extensively about the ethical considerations with someone trying to keep one’s health insurance as well as being able to ensure that quite a bit of money continues to flow into the economy – how does that make it worse for everyone? Doesn’t that make it better? Doesn’t the economy need my cash? Don’t you want to know that the people you’re surrounded with are doing their job safely and not cutting corners for their own benefit and putting all of us at risk?

      I’m not sure having the government limit what the free market can charge for making medications would ever fly.

      I wish the Republicans would have been more proactive about participating in the shaping of this bill – I think they viewed HCR as an way to “stick it to the Democrats and show them who’s boss / who’s got the power”. They miscalculated. They gambled and lost. I’m curious – why aren’t folks upset with them for not doing their job and helping to co-create the bill that everyone would’ve been happy with, instead of turning it into a political power struggle?

      Thanks for commenting! I appreciate your insight.

  6. Powerful piece Linda. Thanks for writing it.

  7. Amazing, thorough, articulate post. Thank you for putting into words what I could barely organize in my head.

    I can’t believe that we are facing possible repeal. God help us.

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