Repeal Obamacare? Over My Cold, Dead Body

Even with its imperfections, the Affordable Care Act (aka Obamacare) is a lifeline for people like me and my family, and it’s worth giving credit to the Democrats and the President for getting it done. Every time I hear one of the Republicans in the primary clown car talk about repealing it, my resolve to re-elect the President and save Obamacare and Dodd-Frank strengthens.

It’s all about the pre-existing conditions. It always has been and it always will be. Like the young mother who was told most people with pre-existing conditions brought them on themselves, I also have a son with pre-existing conditions, and those conditions would, under the system we have today, make it impossible for him to pursue his chosen career or possibly even to function.

The Past

In the summer of 2009, our college-age son suddenly became ill. At first we thought it was just a case of the flu, but it went on for weeks, and came with rapid weight loss. He’s not really a towering giant to begin with and always had difficulty keeping weight on, but he lost nearly 40 pounds in six weeks. I had been laid off from my job in December, 2008 and our COBRA payments were $1700 per month for our family. My husband was self-employed and we were unable to get any insurance from any insurer anywhere. It was then that our COBRA administrator notified us that our coverage was canceled, claiming they’d received my payment one day late.

There we were with no insurance, a very sick son, and little in the way of resources to help him.

After draining a chunk of my 401k for doctor bills, he was diagnosed with ulcerative colitis. It’s a horrible disease with genetic causes. There is no lifestyle change he made that “brought it on himself.” It’s autoimmune and genetic. Worse yet, the medications for ulcerative colitis caused him to become diabetic. While it’s likely that he may have already had unknown glucose tolerance issues, the medications exacerbated it to the point where he was forced to inject insulin to keep his glucose levels in check. He was nineteen years old, a musician majoring in jazz studies with hopes to move on to a career in music education and performance once he finished school, wrestling with life-threatening chronic conditions.

Musicians are self-employed as a general rule. His medications were $600 per month, plus test strips and syringes for the insulin. And no hope for insurance.

That was 2009. Since January of 2010, the ulcerative colitis has been in remission, he’s regained his lost weight and managed to wean off the colitis medications and with it, the insulin injections. Also, my spouse had gotten a job with health insurance that would at least cover catastrophic illness with an attached health savings account.

Because of the Affordable Care Act, we were able to keep our son on our policy and are grateful that we’ll be able to through 2014, when he will be able to get his own insurance. But it doesn’t end there.

 

The Present

As I said, things were definitely moving in the right direction. Having insurance of any kind is way better than having none, particularly with kids in or heading to college and one of them uninsurable under today’s standards. Since the rest of us only needed routine checkups and no expensive medications, we were able to sock the maximum into the HSA and just use it for glasses or doctor visits.

Then the ulcerative colitis flared up just before Thanksgiving. Because he knew what the problem was this time, he immediately made an appointment with the gastroenterologist, got new prescriptions for the medications, and paid a visit to our general practitioner along with a few visits to the lab. That sucked a couple of thousand dollars right out of the HSA, because our deductible is high and hadn’t been met. The price of the meds had gone up since 2010, so we were looking at about $700/month for the UC and diabetes, and then another couple of hundred for medications to treat the skin eruptions, a side effect of one of the medications.

The deductible rolled on January 1st. We had just hit the 2011 deductible at the end of December when it rolled, so all of the January expenses hit under the new deductible. Also, this time around the glucose levels were not stabilized well at all, causing our family doctor to recommend a continuous monitoring system, which one can obtain for the low, low price of $1,800 if, and only if, the insurance company approves it, which they did.

In two short months, the money we’d managed to put away was rapidly depleted, and we were getting to a point where we would be putting money into the HSA at a slower rate than it was coming out, at least until all deductibles were met.

He’s an adult. We didn’t spare any details on what the expenses are, and as you might imagine, he was pretty frustrated at the idea that two years’ worth of savings were being drained in two months. Frustrated, and he felt badly about it too. In one conversation, we asked him what he would do if he weren’t on our insurance. His answer? “I wouldn’t take the medications.”

That’s unacceptable. Not taking the medications means death or hospitalization, not to mention the serious worry and grief we as parents would have over him. He’s our son. What parent wouldn’t do whatever they could to make sure he stayed healthy?

It was in that conversation that I realized how important the future was to all of us, how absolutely different things would be once 2014 was here and the full provisions of the Affordable Care Act took hold.

It is literally the difference between life and death, dependence and independence.

The Future

In 2014, he will be eligible for his own policy under the Affordable Care Act. He’s working now while finishing up his degree, but it’s critical that he maintain his health if he ever hopes to either have a performance or teaching career. Fortunately he also composes and transcribes music, so he has been able to keep some money coming in even when he’s dealing with the flare, but those are not his life’s ambitions.

I imagined what it would mean in 2014, assuming his income level is similar to what it is now, or even just starting out on a career path.

  • Instead of paying exhorbitant rates for insurance, he will be able to obtained it at a subsidized rate. If his income is where it is now, he’ll be able to be covered under the Medicaid expansion with very little monthly outlay.
  • Instead of paying $2,500 up front before any part of anything is covered, he will be eligible for reasonable copayments and much of those will also be subsidized until he is earning a salary that allows him to pay more himself.
  • Instead of feeling guilty about chewing through his parents’ medical savings, he will be able to get the care he needs as a matter of course along with the medications he needs to control the disease.
  • Instead of limiting himself to a career in whatever job he can get with health insurance, he can consider being self-employed or pursuing those dreams he’s had since he was very young without worrying that he will find himself unable to pay for health care.
  • Instead of putting our savings toward maintaining his health, we can begin to consider putting some toward retirement, or our health, or just socking it away for a rainy day.

That’s change I can believe in. You bet. In fact, as I was considering how different life would be and walking through that list with him, tears of gratitude welled up.

It’s not perfect, Obamacare, but readers, it’s a damn sight better than what we’ve got right now, and insurers know it. Republicans know it. That’s why they’re so committed to destroying it. It’s the pre-existing conditions. When those go away and policies actually have to cover conditions that keep people from living full lives or just live, it begins to change those lives and through that change, progress happens.

Whatever you may think about President Obama or the Affordable Care Act, please consider my story to be only one of millions out there. The story I’ve told here is only mine, but it’s not the only one. There is Susie Madrak, who is insured (or will be) because of the high-risk pool bridge to 2014. There is our son. There are others — many, many others — who have the same kinds of stories to tell. These aren’t trivial. They’re life or death stories. They matter. We matter.

This is why I will defend the Affordable Care Act and Barack Obama, and work as hard as I can to re-elect him. I cannot imagine a world where we regress back to a time where people were denied the right to health care without going bankrupt or worse. It’s not perfect, but it’s worlds better than what we have today, or yesterday.

Author: Karoli

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3 Comments

  1. Amen to that. As you, and my other sister Momocrats know, I too have been diagnosed with a life threatening auto-immune disorder. I was lucky enough to attend the first every tweet-up at the White House and tell my concerns, directly, to CTO Aneesh Chopra. I wanted to be assured that the administration was ready to fight all these Republican threats of repeal, because without Health Care Reform my ‘pre existing’ condition – otherwise known as LUPUS- would be a death sentence for my ENTIRE FAMILY. We wouldn’t be able to afford my bi-weekly IVIG treatments (they are about 6k per day and I do three days every two weeks…do the math on that for just a month) or any of the other gazillion medications I take daily. Chopra told me they were ready to use social media and every means to get the word out and that the President (I’m paraphrasing here) was committed to making sure HCR stayed top of mind for folks likes us and other Americans come election season, because then we’d remember WHY we need Barack Obama in for a second term.

    I’ve now gotten so sick I am banned from traveling anywhere and my chemo is causing hair loss and my treatments are weekly (steroids) – so my very last trip was to the White House and plan on making sure they not only stay at 1400 Pennsylvania Ave. for four more years, but they make good on their promises to keep up the good work on heath care and CONTINUE with bigger and better reforms come term #2.

    People like your son and I are counting on it, and I’ve been looked in the eye and told I will not be let down. Time for them to walk the walk…and I have EVERY confidence they will.

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  2. Thank you for sharing your story, it is so very powerful! I will share this with many others. This new Act will benefit a lot of people and I completely support it. And Erin, b,ess you for your strength and persistence. Thanks for sharing! It’s so important these stories be heard! -Alexa

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  3. Laughing…that’s 1600 Pennsylvania Ave. Remind me not to type and take my meds 😉

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