Knotted tongue: My life as a pre-existing condition

Knotted tongue: My life as a pre-existing condition

While "debate" rages in the Senate to undo the Affordable Care Act and replace it with witch doctors and prayer, let me tell you a bit about myself.

I stutter. (So yes, if I ever ask you "Did I stutter," you can normally say, "Well, yes, you kind of did.") I've stuttered for as long as I can remember. (The title of this piece, "Knotted Tongue", is also the title of a book on stuttering which I read many years ago.) It is an affliction which in a world which prizes fluent speech can be somewhat troublesome.

In 2003, a family friend pointed me to an LA Times article. It was about a neuropsychiatrist from UC Irvine who was doing research into the medical treatment of stuttering. He was achieving great success with a combination of drugs which were meant to treat depression. He found that they also impacted the brain's speech centers, and greatly ameliorated stuttering.

At this point I was at a job which had no benefits. That means I had no insurance. But the office visit wasn't prohibitively expensive, and at the time the doctor had coupons which made the drugs affordable. So I went to him.

Let me tell you, the effect was amazing. Within a couple of months of starting on the therapy, my speech had improved dramatically. It had improved so much that I decided "Yes, I'm going to go to grad school and get my library degree, because now I can work with the public without feeling a sense of shame and embarrassment."

I've been on this medication going on 14 years, and I don't see how I could do my job without it. It has been life changing.

But, soon after, I decided that I needed to get myself health insurance. I'd been without it for a while, and a couple of trips to the ER convinced me that it was a worthwhile investment.

I was in my early 30s, I was healthy, I didn't smoke, drank sparingly. I was just what the insurance companies were looking for. (Of course, this was all before Barack Obama took office and the ACA passed.) I thought it would be no problem getting a good plan for a reasonable cost.

I filled out the paperwork for some insurance company, and waited to hear. On my medical history, I put down the drugs I was taking for my stuttering. And I waited.

It didn't take long.


Why? Because I stuttered, and I was on medication to treat that stutter, and I had to be on the medication for 5 years and show stability on it before they would insure me.

Yes. My stuttering was a pre-existing condition.

I had only the foggiest notion at the time about how insurance worked. That denial slapped me in the face and woke me up.

Stuttering doesn't affect me physically. It doesn't increase my risk for heart disease or cancer. You can't get diabetes from stuttering. But some pencil pusher decided I was too much of a risk to insure because of it.

So what did I do? I applied to another insurer... and lied. I didn't mention the stuttering. I didn't mention the medication. And I was approved.

However, by this time, the drug company was no longer handing out vouchers for the medication. It was at that time not available in generic form. And it was expensive. There was no way I could afford $600 a month for it.

So, again, what did I do? I went on the internet, and purchased it for a fraction of the cost from India. I had to just trust that the website from which I bought it wasn't selling me rat droppings. (The fact that I'm not dead and not stuttering is an indication that the drugs were legitimate.)

I had to go to these lengths because of the health care crisis which existed before Obamacare.

Sure, now I work for the government, and I have what's known as "Cadillac insurance". I'm blessed, and so is my wife, who has health issues of her own. But millions aren't as fortunate as we are, and are facing being thrown back to the wolves. All to fund tax cuts to the rich, and to undo the signature achievement of the prior Administration. I was denied insurance for something as innocuous as stuttering. Those who have real health conditions, who need insurance to treat those conditions and for whom lying on their applications isn't an option, are in an impossible position. If you have diabetes, you can't lie and say you don't have diabetes, and then present yourself at your doctor and say "Hey, I have diabetes." The insurance company will investigate, and find out that you had diabetes all along, and deny you coverage. This is not hyperbole. It's what happened for decades before 2010.

The first rule of a politician, as for a doctor, should be to "do no harm". But Republicans seem to want to do nothing but harm. It seems to be the party platform. They seem to want to inflict as much pain on the populace as they can. I won't ascribe motive to this desire. I will merely call it for what it is: evil.

Keep the calls going. Badger your GOP senators. Lift up your Democratic senators. Resistance is a full time job.


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