It was several weeks before my phone call was returned. Apparently the attorney’s office was a very busy place. In time though my call was acknowledged and an appointment, secured. On the designated day I arrived at the attorney’s office. It was located in a modest bungalow, situated on a nondescript stretch of a major surface street, and bordered by strip malls and additional modest bungalows and small businesses. Chris consented to go along as an additional set of ears and to contribute to the dialog if necessary.

Chris had been invaluable throughout the course of the treatment. His presence and his patience and his care were the single most determining factors in my decision to go forward with the drug trial, for I knew what I was in for and not about to take that path solo. It was only right that he be involved in this, the next phase of the journey. Medical chart in hand, we walked the short sidewalk from the street to the front door.

Sizing up the humble setting I commented, “Maybe she’s a hot shot who wants to keep a low profile.”

“I hope so,” grumbled Chris.

An hour later we left the office, flush with confidence and promise. The initial interview went great, the case looked strong, and the attorney would contact me in a few days with a final decision. I had no doubt that she would take me on as a client, and a few days later I was informed that would indeed be the case.

*

Several years later I knew more about the law, type 1 diabetes, the links to interferon, and the growing frustration of un-returned phone calls than I can possibly recount without inducing a coma. I learned the function of medical experts in a medical malpractice lawsuit and grasped the concepts of liability and causation. I was coming to terms with the reality of brittle, hard to control diabetes. I considered an insulin pump until I discovered my insurance would pay very little toward the purchase of an I-pod sized device the price of a small economy car. I prayed to God that the month long periods of silence from my attorney were a sign of confidence, not indifference. Given the facts that had unfolded like a stadium-sized origami during this time, I really couldn’t imagine otherwise.

In my own research I’d found studies and examples of successfully treated Hepatitis C that had not induced diabetes. The treatments were successful because the physicians involved were competent, vigilant and proactive. I read of Insulin therapy used in conjunction with interferon, therapy that protected the pancreas and eased the strain on that small, essential organ. My confidence was reinforced by others who like me, could not understand any possible justification for not informing me of alleged abnormal glucose levels before, during, or after the study. Dr. Thomas’s assessment of an underlying condition that was simply “unmasked” seemed more appalling now than ever, and there was a growing consensus that supported my initial misgivings: If indeed there was such an underlying condition, why was I considered an appropriate candidate for this study in the first place?

None of it was right, but there was a blessing down the road. There would be justice. There would be accountability. There would be compensation. Pain, suffering, and punitive damages no longer seemed like frivolous, litigious catch phrases trotted out by victims of slippery grocery store floors. Mine was a legitimate, valid, life-altering claim for which I was reminded almost every day, one of the 8 times I pierced an appendage with a needle.

In the first documents filed by my attorney, the amount of monetary damages claimed was breath taking. There would be more than enough money after the 40% attorney fee and all other expenses to more than address all my health issues and concerns. It was in all honesty a ridiculous amount of money, far more than necessary. But what the hell? That was the least of my concerns. And who knew? Maybe I’d need a liver transplant someday.

During those years I entertained a whole lot of fantasy: a donation to the American Diabetes Association, a donation to Hep C Connection, and my own personal favorite, a donation to the medical center and the liver research facility (Dr. Thomas’s baby) for ethics training.

Now for anyone who’s gagging at the sense of false altruistic “Pollyannaism”, you have every right to do so. I totally understand, but gag no more. There was a new Miata hard top convertible in the works for me: my mortgage paid, my credit cards paid, and a new Subaru for my best friend to replace the piece of crap Subaru to which he was so utterly devoted. Generosity would abound and I would still have plenty left over.

With the small detail of profitability out of the picture, I may even open another gallery, this time with LOTS of help. In a sad, small, slightly twisted way, I felt that at the end of the day the scales would be balanced. I’d deal with punctures and the insult to my favorite hobby (cooking) and even an abbreviated life span. I could accept all these things knowing that the scales had tipped back to my favor. Life would be good again.

*

Deposition. Now, there’s a relatively benign sounding word. One is deposed. One is asked questions and one answers those questions. That was my view, a perception furthered by my attorney.

“Relax, be yourself. It’s not so bad. It will be over before you know it.”

It wouldn’t surprise me to see those very phrases inscribed on the door of a 19th century dental office.

*

The night before I was to be deposed by the defense my attorney called me.

“Kurt, are you sitting down?”

“Yes, but before you go on, tell me: Good or bad news?”

“Well, interesting.”

“Hmm…”

After a respectful pause for my “hmm”, she went on,

“I just received a letter from Paul’s (the defense attorney) office, forwarded from the pharmaceutical company. It seems that they made a mistake on your last viral count. Apparently you had rid yourself of the virus. There was zero virus detected at last count. You shouldn’t have been removed from the study. You should have continued treatment. You were on track to curing the Hep C. However, since you were removed prematurely, you should be retested.”

After hanging up, I’d be hard pressed to describe what it was precisely that I was feeling. A good description would be an over cooked stew that had sat on the stove a little too long. The ingredients, though varied, had been rendered indistinguishable. But that’s an exaggeration. There was one, over riding response. Perhaps I had one less serious medical condition, and for that I was incredibly grateful. The gratitude was seasoned with a hint of animosity though, for my suspicions of a “bums rush” out of the study now felt a little more probable than mere suspicion.

A week later, I sat in my new doctor’s office, Dr. Smith now nothing but a bad memory. I fidgeted with anticipation of the results of my hepatitis viral count. It was de ja vous all over again.

“I’m sorry, but the virus bounced back. Your viral load is higher than it’s ever been. You needed the attritional 24 weeks of treatment to completely eradicate its presence. I’m sorry.”

*

The deposition was uncomfortably close to that previously mentioned 19th dental office. It was a little like having teeth pulled without the benefit of drugs, and it went on for hours. Truths were skillfully distorted and facts were twisted into much more convenient forms. One highlight was an alleged conversation with Lisa Church. During the weekly visit, I’d made a passing comment about cocaine experimentation in the 80’s. Lisa made the same comment. We laughed about the stupid old days. But now the spotlight was on my illegal drug use and every conceivable implication. Apparently, I was a very bad person.

My unprofitable failure of a gallery became an issue, as did the various unsavory methods of contracting Hepatitis C. Suddenly there was the possibility that my paternal grandfather was diabetic, and the nature and demise of my personal relationship with my ex business and life partner was suddenly quite significant. It was clear that the defense planned to paint me as a drug addled, slutty failure in business and life.

The other side of the table had representatives from the University legal team, the insurance legal team, and the pharmaceutical legal department. Our side of the table was pretty slim, just the two of us, and even then it felt like a singular effort. My attorney was surprisingly mute throughout the process. It was grueling and the details aren’t necessary. Suffice to say that it ended when I lost my temper.

We were all getting tired. It had been a very long day, and then a University attorney waved the signed consent form one too many times under my nose. I’d mentally rehearsed a speech that finally gushed out, Linda Blair fashion.

“Sir, had I known that I had a pre-existing condition of high blood sugar, I would not have participated in the study.”

I think I said something about consent being a 2 way street as well. I think I mentioned “informed” consent as a condition of consent. At least, I hope I did. I could go back and check the transcripts to that deposition, but I don’t want to. I don’t care to relive that day. It does seem to me though that the deposition ended shortly thereafter.

The defense depositions continued. Some further highlights in the case against me were my former physician, Dr. Smith, who downplayed our friendship and who informed the defense that I initially sought her council not because of high liver enzyme levels, but because I told her I’d had unprotected sex. There was no written record of that, but that’s what she “recalled.” There’s more, but I’m sure you get the picture. The defense was preparing the stage for a jury trial. It seemed desperate.

*

At last it was our turn to depose. Here are a few highlights my attorney passed on to me:

-Lisa Church, though demonstrating an impeccable memory of a discussion on cocaine use simply didn’t recall discussing my concerns about diabetic symptoms. She made this claim, knowing full well that Chris was there as a witness to the discussion.

– Dr. Thomas and Dr. Smith are golfing buddies and members of the same country club, a fact that most certainly should have been revealed.

– Dr. Thomas claimed he was unaware that interferon could injure the pancreas. This was quite a statement, coming from a well-known hepatologist, much practiced in the treatment of hepatitis C. He claimed this ignorance despite a warning clearly labeled on the drug packaging and the contents of the consent form that Paul had nearly paper- cut my nose with during my deposition.

– Dr. Smith, my former friend and physician had records in her possession that documented concerns about my escalation in glucose levels. The documents clearly question the treatment, and suggest an intervention to the treatment. It was obvious that she’d been aware of my condition all along, though she had pretended otherwise. Clearly, she was covering her ass.

It was looking more and more like an incestuous bunch of incompetent bozos drove my clown car off a cliff. My attorney was nearly giddy.

“There is no way this will go to trial,” she announced one afternoon. We’ll have this settled in no time. You will be able to sleep again. Now, we have an offer on the table from the pharmaceutical company and I suggest you take it. It’s not much, especially after expenses, but the real settlement is with the University.”

Life was looking better than it had for a long, long time.

All that was left was to get the causation medical expert’s testimony nailed down. This particular expert was a big shot endocrinologist at a major California University. His testimony was critical for the upcoming meeting with the defense. I wondered why my attorney was waiting to the last, possible minute to get this crucial testimony, critical to support our theory. She was to meet him in California over the weekend, and then meet with the defense early the following week. I assumed she was simply confident, and her confidence was my confidence. My birthday was just around the corner. It sounded like a hell of a celebration was going to be in order.

I don’t know what it is about my birthday, but it seems to be the harbinger of events greater than the mere passing of yet another year. I received the phone call from my attorney the following Monday.

“Kurt, I always told you that if things go south you’ll be the first to know. Dr. Seinfeld, the medical expert won’t say what we need him to say. He’s reversed himself and is now in fact supporting the defense. He says, based on the evidence, and that regardless of your treatment, you would have developed type 1 diabetes in five years. The case is effectively over. I suggest that take anything they have to offer in the event the case isn’t thrown out.”

I stood by the window, phone still to my ear and I thought of that day in the gallery when I first was notified about the Hepatitis C. It seemed an eternity had passed. I’d been on a roller coaster for years: Ups and downs and highs and lows and lots and lots of drama. I hadn’t slept through the night in years.

Once, my attorney told me about a case she’d won. She told me of the plaintiff thanking her, and telling her that he could finally sleep again. These thought crossed my mind in a flash.

“Kurt, what do you want to do?”

The hell of a celebration was now hell sans celebration. My attorney, overnight, had morphed into a mouthpiece for the defense.

“Kurt, you’re still not getting the difference between liability and causation. It doesn’t matter how much they fucked up, or what they did or didn’t tell you. You would have developed type 1 diabetes in five years anyway and your damages are limited to 5 years, minus the 4 years and 10 months that followed the first injection of interferon. In other words, your damages are limited to 2 months.”

*

The University agreed to a settlement conference. Apparently the judge declined the defense petition to throw the case out.

On a morning bleak, despite a cloudless sky, I sat in a soulless conference room in the nest of the defense offices. I was surrounded by bad art and unaccompanied by my attorney. She was in Europe. A disembodied head and a sea of big blonde hair stared tiredly from a computer screen linked by a precarious Skype connection. She was understandably overcaffinated as it was 3:00 am in her location. Another attorney she had requested to be physically present at the mediation greeted me. I’d never met the man, and I really didn’t like him. He’d made his conservative, Republican leanings clear as he joked about the impending presidential election with my sleep-deprived attorney.

The mediator, a pretty, capable woman assured me that her role was impartial and that she limited the negations to 3 offers. She bragged about her ability to get things done. She was right. It was a relative quick and horribly disappointing resolution. There was a token offer and no possibility of a higher, counter offer. Documents were signed and a smug congratulatory handshake sealed the deal.

I left the building, walked to the parking lot, got in my car and sat. I wasn’t quite ready to face traffic. As I waited, the mediator exited the building and shouted "high five" across the parking lot to someone exiting the parking garage.

"Nailed another one!"

As her friend crossed the lot to join her, the mediator saw me. She lowered her tones and at least had the good grace to appear to be a little embarrassed. I was later informed that the highly effective mediator is married to one of the partners of the defense’s law firm: she was an agent who was sleeping with the “enemy”, and she finalized the outcome of my case.

*

So, that’s that. If the ending seems abrupt it’s because it was. This saga of endless chatter, damning details, maddening discovery, high hopes and low outrage ended with a leaden thud. Of course, after all that I couldn’t quite give up the ghost. A bit of further investigation revealed that the damning medical expert’s unsupportive testimony had come from a man recently granted a new position at his institution. Dr. Seinfeld had replaced his predecessor, a department head who had been politely asked to depart his post due to professional conflicts with a pharmaceutical company. It also bears mentioning that the drug company involved in my case has a major facility and affiliation with Dr. Seinfeld’s University and by association, perhaps the good doctors research funding and paycheck.

Hey, I’m just saying.

In the odd and often twisted world of the legal system the burden of proof fell upon me, the plaintiff. Despite the most outrageous decisions, judgments, actions, reactions, and lack of action, I was required to prove that more likely than not, I would have not developed type 1 diabetes in the natural course of my life. In lieu of proving a negative I’m left to accept the “fact” that in spite of 26 weeks exposure to a known pancreas killer, I was destined to burst into a fireball of brittle, difficult to manage type 1 diabetes.

I’m told I should move on and accept things as they are. I’m supposed to find closure.

What I have learned is indeed, knowledge hard earned, and the only closure available to me is the ability to express my thoughts in the hope that by in doing so I can help prevent a repeat of this fiasco to another naïve soul.

The final advice? Be truthful but cautious when consulting with your physician, for anything you say or do can and will be used against you if something goes wrong. If something does go wrong, be cautious in your choice of attorneys. Shop around. When you find an attorney that meets your requirements, be clear that from the very start that timely communication is not a favor or a courtesy, but a requirement. And last but not least, keep the faith but watch your back. There are people who don’t grasp that they do harm, who don’t understand, or who chose to not understand the implications of their actions. These are the most dangerous people of all, because as far as I know, there is still no emergency cut-off switch to the juggernaut of their singular and unwavering, self-serving agendas.

In the last few years I’ve developed a theory. Several people have come forward after hearing my story and informed me that they too have had the exact same experience: treatment with high dosages of interferon followed by the sudden onset of diabetes. One person in particular stands out. He’s an RN at a major hospital and as such no stranger to the medical world. Even with that background, he didn’t realize that his treatment with interferon was responsible for his sudden onset diabetes. No one bothered to inform him of that possibility, either before or after his treatment.

I’m reminded of the pre-settlement days before the cigarette companies were finally overwhelmed by the legal consequences of undeniable cause and effect. These companies spent millions of dollars defending their product. Tobacco executives were well aware of the consequences of a chink in these defenses, for if one case were settled against the cigarette industry it would create a precedent. That chink in the damn would release a flood of litigation. We know now that the fears of those tobacco executives were quite justified.

I’m convinced this is another underreported and overly defended bit of egregious malfeasance. I believe that if interferon is properly dosed and administered by competent professionals, it can do good. But, I also know from my experience and the experience of others that it’s misuse can be disastrous.

It’s my belief that there’s a deliberate and well-funded effort to protect the interests of the powerful. I know that’s not big news, but when it gets this personal, it’s knowledge that takes on an entirely new level of meaning.

Never underestimate the illusion of authority and the delusion of ego, especially when that ego is cloaked in the legal “personhood” that all large corporate interests enjoy. Your own, small, personal interests are seldom the prime concern of anyone but yourself and those who love you. Use caution when consulting with your physician, do your homework first, and be aware of the perils of candor and the power of the juggernaut.

At the end of the day it is up to you and you alone, to exercise control and responsibility for the events that can change your life. Question your doctor’s advice with a critical eye, and if things do go terribly wrong think twice before involving a lawyer. Understand that justice, in the eye of the law, is most certainly a relative term.

Kurt Niece is a teacher, writer, artist and author. His latest work, "The Breath of Rapture" is a satirical novel about the perils of religious fundamentalism.

kurtniece

kurtniece

Kurt Niece is a teacher, writer and artist.

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