Our First Guest Blog: Daniel Malito writes about struggles with getting his pain medication paid for

Insurance woes. Many of us have heard about a “friend of a friend,” or “some guy” who has been well and truly abused by their health insurance company. We all have the same response — “that’s horrible,” or something to that effect. Luckily, though, most never get the pleasure of dealing with insurance shenanigans first hand. Well, I’m here to tell you that real people do have to deal with health insurance B.S., for lack of a better word, and it can range from being mildly annoying to thoroughly life-changing.

I was diagnosed with Rheumatoid Arthritis when I was nine. In 1987, before compact discs, the PC, and MTV, I was a mere third-grader who, we thought, had simply caught a bad case of the flu. After several weeks of harboring this “flu” without improvement, the doctors began to look for other causes. To cut a two-year story very short, let’s just say that I was diagnosed with something called Juvenile Rheumatoid Arthritis when I was eleven. My mother diligently spent hours upon hours reading and researching the disease at libraries all over – the “Wikipedia” of the real world at the time. Unfortunately, as is still true today, doctors did not have any idea what caused the illness. So, as one of the first serious cases of the disease in my area, my parents and I went from doctor to doctor, agreeing to test after test, just on the off chance one of the procedures would provide some insight into the ailment that was previously unknown. That never happened, though, and I went from a child with Juvenile Rheumatoid Arthritis to an adult with plain old R.A.

Throughout my childhood and early adulthood, I was lucky enough to be covered by what could be called a “Cadillac” insurance plan. I was able to choose my own doctors, purchase experimental medication, and have any procedure performed without pre-authorization. I cannot imagine what would have happened if we had to fight my health insurance company in those uncertain initial years – I could have ended up in a wheelchair. I tell you this because I want you to understand that I have experienced the good side of health insurance as well as the bad, and the difference is striking.

Eventually the Cadillac plan became too expensive to sustain. Because I was officially disabled, I was also automatically enrolled in Medicare. Because Medicare is always the primary insurance, I was basically paying upwards of $12,000 dollars a year for secondary insurance. So I dropped the Cadillac plan and Medicare became my sole insurance carrier.

Now, I have to take this opportunity to tell you that Medicare is one of the best insurance carriers I have ever dealt with – but that classification comes with two corollaries. First, it must be said that I suffer from a disease that is on the Medicare short list for ailments that are allowed a very large amount of leeway when it comes to insurance claims. Second, I am only talking about hospital stays, doctor’s visits, and medical procedure coverage. Prescription coverage is an absolute and utter nightmare.

For those of you who don’t know how Medicare works here is a brief summary. Part A is the hospital coverage, which covers hospital stays and part B is the actual medical insurance, which covers doctor’s visits and the like. Both of those parts pretty much take care of themselves and are more or less painless in their execution. Part D, though, is the prescription coverage, and even understanding it is a Rubik’s Cube of donut holes, external medical insurance companies, and denial appeals.

Part D is not administrated by the Federal government — they farm the work out to companies like Cigna, Blue-Cross Blue-Shield, and others. You get to pick whichever plan covers you best, but the truth is, none of them cover you without a fight. You have to be prepared to go all the way, too. Let me give you an example. Because I have prosthetics and because the joints I have left are mostly bone-on-bone, I take a copious amount of narcotic pain medication. I have been taking the regimen for over ten years, but when I switched to Medicare part-D four years ago, they suddenly and without warning decided to cut the amount of my pain medicine to less than one-fourth of my daily prescribed dose. In real world numbers that meant instead of sixteen pills, they expected me to survive on just four. Obviously, this was impossible – not only would I be in constant severe pain, but also any first-year doctor knows you cannot simply cut a patient’s narcotic dose by ¾. The withdrawal symptoms alone could cause cardiac arrest. Seeing as how insurance companies are supposed to have doctors on staff making these decisions, I decided to call and remind them of this fact. To my surprise, I was told that patients are not able to speak to staff doctors directly, and that I’d have to file an appeal. So I did just that. I put a rush on it so that they had to respond within 72 hours, figuring it would alert them of the urgency of my situation.

I got the response back within a week and I was denied again. So, I called them back and demanded to speak to the real live person who was making the decisions. I was again told that this was impossible, and I would have to make a second-level appeal. So, I did just that, and put a rush on it again. Two weeks later, I received my decision – denied again. At this point, there was nowhere left to go inside of the medical insurance company itself, I had to appeal to an external review body if I wanted to take the fight any further. So, I did just that. I appealed to the external review company and put a rush on it yet again. To absolutely no one’s surprise, the external review body denied the appeal forthwith. They simply rubber-stamped the denial that my medical insurance company gave me. I called this external review body and asked to speak to a live person, and was told, yet again, I was not allowed to speak to a live person. My only recourse was to appeal the decision and argue my case in front of an administrative law judge. So, that’s just what I did. I would be damned if a review body which, by the way, was hired by the same body who administered Medicare, was going to deny me. The worst part was that I knew if I could just speak to a human being I would be able to settle the dispute right then and there.

So, I waited almost eight months to speak to an administrative law judge. I had a phone trial, and I argued my case to the judge. I indicated that the medical insurance company was denying me because of cost, not because of any other factor, which was technically illegal. The insurance company said I was taking an unsafe amount of pain medication. So I asked the judge to consider how that could be true when I was now taking the same amount of narcotics as I always had by simply substituting a pain medicine that was cheaper — which the insurance company had no problems paying for. Unfortunately, the substitute medication made me so drowsy I was unable to drive or work. At the end, the judge thanked me for my cogent argument, and a few weeks later I got word I had won my case. The medical insurance company had to pay for my original medication. The most ridiculous part about the entire affair was that the judge was the first live person I was able to talk to about my case. If they had just let me talk to an actual human being, I would have cleared the issue up before wasting everyone’s time.

So, here I am, a year later, with the company losing money on me every month. I knew they didn’t like being forced to pay for my medication, but I never thought they’d retaliate. Unfortunately, I was wrong yet again, and now the company has denied me the full dose of my second pain medication. So, I have started the entire procedure for a second time. Frustrated? Sure, but I won’t let them win this one either. They are not allowed to deny me simply because of cost, but when medical insurance companies pay doctors to make decisions for them, the conflict of interest involved is astounding. I’ll win this one, too, though, because I will see it through to the end. Remember, the insurance companies are counting on you giving up! Don’t give them the satisfaction – see your appeal through to the end. Life’s hard enough without having to go through it without medicine that works.

Daniel Malito is a columnist for both Creakyjoints.org and Huffingtonpost.com focusing on health-related issues.


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