FROM: Julia Schopick, Patient Advocate, PR Consultant, Medical Writer
February 14, 2006
Dear Mr. Moore:
It was back in the 1990s, at a taping at the University of Illinois of either The Awful Truth or TV Nation. You were kidding a gentleman in the first row for wearing a beret. “Don’t you know berets aren’t in style anymore?” you ribbed him. Sitting next to him, I quickly called out to you: “But he’s from Flint!” To which you answered, “From Flint? Then you can wear whatever the hell you want! Come on up and give me a hug!”
Which he did, and you did.
The man you hugged, Tim Fisher, was my late husband, and that was one of his proudest moments!
What you didn’t know was that underneath his gray beret was a huge scar, the result of his 1990 brain tumor surgery and the many subsequent surgeries for the so-called “complications” caused by the original surgery.
Tim was courageous, patient, and a truly amazing man, not only as friend and husband, but as a fearless partner in this journey into the underbelly of the U.S. “healthcare system.”
Together we battled the medical mandarins, challenged the norms, and wreaked havoc on a few doctors’ egos along the way! But we kept Tim alive – with a condition that most doctors expected would kill him years earlier.
Sadly, our battle ended when in November of 2005, at age 56, Tim died.
I am writing to you today, hoping that you will call on me to be a resource for your upcoming film exposing the health care industry. I have more than a decade of stories to share, and, like you, I have a passionate need to get information out that will make a difference in other people’s lives.
I learned right from the start that “healthcare” was a misnomer. Unfortunately, Tim’s care was not about trying to restore him to health. More often, it was about doctors “following the rules,” doing not necessarily what would work best for Tim, but what was “safe” for them to do. If Tim became healthy or stayed alive as a result, well, that was an unexpected bonus for most of these practitioners.
In this email, I’ll share the stories of our financial hardships relating to Tim’s treatment. But I’ll also tell you about the substandard care that Tim (and many others, in my opinion – even those with great insurance) get these days in America. I think you’ll agree that the American Healthcare system is not the great system we are led to believe it is.
I learned early on that insurance companies would try in any way they could to get out of their obligation to pay. From the very beginning, our insurance company tried to get out of paying the entirety of Tim’s huge hospital bill, which included several surgeries (a craniotomy, followed by another surgery for the removal of scalp bone; yet another for replacing that bone with a plastic plate; also surgeries for cranial fluid leakage, shunt placement and shunt revision). In addition, there were several rounds of IV antibiotics; and of course, the cost of the lengthy hospitalization itself. All of this together cost in the neighborhood of hundreds of thousands of dollars. (I don’t think we even had a few thousand dollars in the bank, much less hundreds of thousands!)
Why did our insurance company threaten to NOT pay all my husband’s bills? Well, you may not believe this, but they called Tim’s brain tumor a “pre-existing condition” and tried to weasel out of their responsibility by claiming that we had actually known he had a brain tumor five years earlier -- and that we had decided to ignore it!! I couldn’t believe it! Luckily, they finally paid – but only after many months of denials, and the amazing efforts of our dear friend -- who also happened to have sold us the insurance policy.
That experience made it clear to me that being an advocate for my husband was going to be my first priority for as long as he lived. Because the “the system” certainly wasn’t going to do it. I made sure he received every treatment we both thought he needed -- whether or not insurance would pay (and mostly they wouldn’t.) I researched and talked to experts all over the country, and put together a program for Tim that included truly nutritious food -- not the health-endangering Jello, mystery meat and pudding that passes for food at most hospitals. He took various vitamins, received holistic treatments – none of these were covered by insurance at all.
In addition, because our insurance didn’t cover any of the cost of his prescription medications (why exactly DO we have insurance, anyway?), I paid several hundreds of dollars a month out-of-pocket for them, as well. Self-employed, and by then our sole support, I was becoming poorer by the month. (And, by the way, at this time, before Tim was on Disability and Medicare, I was paying insurance premiums of $1700 per month!)
Tim went for 10 years without a recurrence, in itself a miracle, since his original tumor had been an aggressive cancer. We were both very proud, and extremely hopeful.
But in 2001-2002, Tim had his first brain tumor recurrence, and he again endured similar complications to those he had suffered in 1990. Again, he battled infections, cranial fluid leakage, suffered additional surgeries. Why so many avoidable complications from one surgery? Were we at a rinky-dink hospital out in the sticks? No. We were once again at a “top” Illinois teaching hospital!
By now, Tim was on Medicare because of his disability, and we couldn't get secondary insurance because of his (now real) “pre-existing condition.” This time, Tim had been hospitalized for 8 months, and my business was at a really low point. So I ended up owing the two hospitals where he had been treated (badly, to add insult to injury) several thousand dollars out of pocket for the 20% Medicare wouldn't pay. Did these two extremely rich, well-endowed teaching hospitals even consider forgiving our “debt"? Silly me! I had hoped they might, considering the fact that Medicare had already paid each hospital several hundreds of thousands of dollars. But no. Both hospitals chased me down, demanding money I certainly didn’t have. They called and called with dunning calls, disturbing me daily. Finally, somehow, I paid them off.
In April, 2002, following this 8-month medical fiasco, Tim came home. For the first time in his life, he was severely brain injured: He couldn't walk, sit up on his own, read, or remember much at all. He was incontinent. All that was left to him were his ability to speak, his enjoyment of classical music, his sweet temperament and his amazing wit. (In case you couldn't tell, he was the love of my life.)
After this, we didn’t hear from the medical community at all. They had totally given up on Tim. For these last 4 precious years that he was with me at home, I kept trying to find treatments that would work, so that he would again feel that his life was worth living. I bought him an exercise bike that could be accessed from his wheelchair, to which he was lifted from his bed by a caregiver. I fought the State of Illinois so that they finally agreed to pay for that caregiver. (Until they finally approved us, which took many, many months, I paid several thousand dollars out-of-pocket for his care.) I got him every treatment I could possibly get. And I was still paying for his meds 100%. But nothing worked, and this past November, he went into a coma and died.
As you can well imagine, by the time my Tim died, I was seriously in debt, had filed bankruptcy and had (and still have) huge IRS problems to deal with.
I know that part of your message is going to be that many people can’t afford any insurance or health care, and even those who can are often facing an uphill battle getting insurance to actually cover the supposed top-of-the-line, state-of-the-arts drugs, surgeries and treatments. These are all important issues to expose.
But, there is another, equally important point I’m hoping you’ll also include in your film: medical care, even among the insured, is seriously compromised in the U.S.
In fact, a lot of the medical care provided in this country is quite bad. What is GREAT, however, are the PR firms that tout the wonders of various drugs, devices, treatments, and medical specialties. The AMA, AHA, and all the pharmaceutical companies are paying out billions in advertising, marketing, PR and promotions to sell, sell, sell us on the ideas they are paid to sell. They convince us all -- and maybe themselves, too.
Lots of these so-called “life-saving drugs” are really not life-saving at all. They are simply money-making products that pharmaceutical companies have convinced both patients (via TV advertising) and doctors (via sales reps) that their patients need. In many cases, lifestyle changes would bring far better results. But patients end up NOT buying food in order to purchase these “life-saving drugs,” many of which they probably don’t need. And they just get sicker and sicker – and more dependant on their doctors, their drugs and “the system,” in general.
During Tim’s many hospitalizations, time and again there were instances of medication errors (overmedications, undermedication, mismedication) and other medical mistakes that landed him near death in the ICU.
Doctors gave Tim medicines he didn’t need, for which we were charged hundreds, sometimes thousands, of dollars.
There were doctors who preferred to operate, rather than use cheaper, simpler solutions.
Many doctors (whose names we didn’t even know) poked their heads in the door of his hospital room, charging several hundred dollars per “poke.”
It was amazing – and horrifying.
I hope you will agree that these kinds of stories also belong in your film, and I hope you will consider using them. (I can also put you in touch with dozens of other people with similar stories.)
As you can probably tell, I am very excited to hear that you are making this important film. I hope you’ll call on me to share my information, stories and experiences.
Julia Schopick, Patient Advocate
Tim Fisher’s Wife/Widow
3-13-49 to 11-8-05