Documentarian Extraordinaire
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.
Many thanks,
Julia Schopick, Patient Advocate
Tim Fisher’s Wife/Widow
3-13-49 to 11-8-05
Is Promotion More Efficacious Than Science?
Cardiovascular disease, I surmise, is very concerning to both those patients who have this disease, as well as those who manage this concerning disease. Furthermore, this disease is likely a cause of distress as well as confusion for those professionals who seek the best treatment options.
Hypertension is one of these cardiovascular diseases, and a prevalent one at that.
Hypertension is a frequent medical condition that affects around 1 billion people in the world, and around 25 percent of those in the United States alone. Over 90 percent of the time, the etiology for one developing hypertension is not known, nor is the condition symptomatic often. If left untreated, hypertension can be the catalyst or such events as stroke, heart attacks, as well as heart and kidney failure.
As a result, there are increasingly many pharmacological options available to delay if not prevent such diseases, and these drugs work in different ways for the same cardiovascular diseases that are acquired often.
Many health care providers are understandably unclear as to which treatment option would be most beneficial for their cardiac patient- considering the different classes of medications for cardiovascular disease, and taking into consideration the safety and efficacy of each, which would likely be a difficult task.
As I understand with the medical condition of hypertension, it is very important to control elevations in one’s blood pressure to prevent future cardiovascular events caused by prolonged uncontrolled hypertension in such individuals. Such events include an increased risk for strokes, heart attacks, and kidney failure, among other damage that can be caused in the unmanaged hypertensive patient.
While hypertension is evaluated according to different stages of severity, most hypertensive people have initially what is called primary hypertension, which is also called essential hypertension. Any stage of hypertension one might have typically requires medicinal intervention.
With so many classes of anti-hypertension pharmaceuticals, each with their own mechanisms of action, how does a health care provider determine which medicine the provider will prescribe for their patient?
Some time ago, there was evidence offered to reassure health care providers what was in fact the most reasonable and necessary drug treatment for hypertension. This reassurance was due to the results of the ALLHAT trial.
This trial lasted 4 years, and the ALLHAT trial was published in the Journal of the American Medical Association in 2002. Also, the trial was conceptualized and implemented by the National Institute of Health during the 1990s- with the intent to discover which class of medication was most beneficial for hypertensive patients.
This trial was the largest study to date that addressed, among other variables, those patients who were hypertensive. The study thoroughly analyzed and examined which class of medications would be the most effective for these patients. The patients in this trial were given a selection from these different classes of medications for their hypertension treatment that were involved in the ALLHAT trial.
In addition, the ALLHAT trial included over 40,000 subjects who were over the age of 55 and were evaluated in over 600 clinics during the course of this trial. Nearly half of the patients in this trial had metabolic syndrome, which is a syndrome where one is obese, has dyslipidemia, and glycemic issues as well.
While Pfizer financially contributed a small portion to support this trial, ALLHAT was overall funded by the National Institutes of Health at a cost of around 130 million dollars, which again was for the purpose to determine the best medicinal treatment for the patients that were studied in this trial according to the trial’s study plan. This study protocol had not been done in the past, and the comparative effectiveness design strengthened this clinical trial.
Because the NIH did in fact develop and fund this study, the ALLHAT trial, as a result, was largely if not completely void of bias and commercial interference compared with those trials that are sponsored by the manufacturers of drugs studied in other trials often. Because of the ideal design and methodology in which this trial was performed, most concur the results of this trial are quite accurate and valid.
Once again, the ALLHAT trial provided data that allowed a true comparative analysis of these various classes of drugs for hypertension, which included calcium channel blockers, ACE inhibitors, Alpha Blockers, Beta Blockers, and diuretics. The researchers examined the action of these classes of medications on the subjects who possessed various cardiovascular disease states- with a focus on the ability of each one of these different classes of drugs on the disease of hypertension the patients in the study had during the trial.
As the trial was completed with data collected and analyzed after a 4 year period, the ALLHAT trial concluded that one particular class of medications involved in this study proved to be the most advantageous for the subjects in the trial. Superior in what it showed as far as its safety, efficacy and cost for those who require treatment for their cardiovascular disease state, as well as the prevention or the delay of progression of additional cardiovascular disease states that were studied and examined.
Amazingly, this one drug class in this study in fact is nearly as old as the subjects involved in the trial.
ALLHAT results specifically and clearly concluded that thiazide diuretics are, overall, the preferred choice of medicinal treatment for initial medicinal therapy with those who are hypertensive patients, as this class of drugs overall proved to be equivalent if not superior in many ways compared with the other classes of drugs in the study.
Diuretics offered great protection against cardiovascular disease and controlled hypertensive patients as they needed to be, and proved that diuretics should be the first line drug of choice in such patients. The diuretics also decreased the risk of mild congestive heart failure and stroke, as well, compared with the other classes of drugs in this trial.
Thiazide diuretics were in fact superior in these risk factors in this comparative effectiveness protocol, and just as effective as the other classes of drugs it was compared to in this trial with preventing myocardial infarctions. Thiazide diuretics in fact have been studied in such disease states associated with cardiovascular disease for over 40 years and have shown similar results as were shown in this trial.
This class of medications, diuretics, have been available in the United States for well over 50 years, and presently costs about 25 dollars a year, instead of a few dollars a day for many if not most branded medications for CV conditions that were examined in the ALLHAT trial.
So this finding, of course, concludes that diuretics not only provide equivalent if not superior benefits for cardiovascular disease patients, but also provides cost savings as well as illustrated in this trial. Again, the ALLHAT trial was rare and unique in that it compared diuretics to these other classes of medications directly, which is not done frequently with clinical trials involving branded pharmaceuticals, as they usually do comparative studies with simply placebos most of the time, so their efficacy comes into question as a result.
Yet, even though this trial was potentially beneficial for so many who are involved with prescribing medications as initial therapy for their hypertensive patients, the recommendations based on this trial to start a patient on such a diuretic was remarkably not followed entirely if not mostly by those health care providers. There was of course hope and expectation that diuretics would be utilized to a greater degree based on the results of this trial, and the researchers were puzzled that this was not occurring.
So much amazement was occurring with these researchers of the ALLHAT trial results that they eventually implemented what was called an ALLHAT dissemination plan from the years 2003 to 2006 at a cost of close to 4 million dollars. They desired to educate health care providers about the ALLHAT results, and the significance of the findings. However, the acknowledgement of the benefits of diuretics continue to be unrecognized by health care providers who select other classes of drugs to treat their hypertensive patients, as they still do today.
The other classes aside from diuretics do in fact have benefits with cardiovascular patients, with compelling indications in particular. Yet the etiology for the prescribing habits regarding diuretics and why this class of medications is not chosen as often as they should be is largely unknown after several attempts to convince health care providers otherwise.
Others have speculated why this issue with diuretics in the ALLHAT trial never caught the attention to change the prescribing habits of health care providers, overall.
For example, and of no great surprise, these results of the ALLHAT study appeared to be of notable concern to those pharmaceutical companies who promote the other classes of medications in the ALLHAT trial that are more expensive than a thiazide diuretic.
Reportedly, these companies who market these other classes of drugs increased their promotional spending in order to blunt the potential effects this trial may have on the usage of their cardiovascular medications that again belong to the classes that were involved in the ALLHAT trial soon after the results from this trial were published.
Sampling of their branded medications to health care providers increased noticeably as well from those pharmaceutical companies that had branded medications for cardiovascular disease states.
Thiazide diuretics, while clearly the apex for the prevention and management of hypertension and other cardiovascular disease states, do not engage in this promotional behavior that appears to be more of a powerful force than evidence-based medicine, as with the case of this diuretic and the benefits of this class of drugs that has been discussed..
Furthermore, drugs combining two medications from different classes of medications for hypertension and other cardiovascular disease states are increasingly preferred by many health care providers for understandable reasons presently. Such reasons as the severity of the cardiovascular disease states that may exist, along with the risk of developing these cardiovascular conditions with their patients. It has been said that nearly 70 percent of hypertensive patients alone require more than one medication to adequately have their hypertension controlled.
It is not unusual, for example, for a branded pharmaceutical company to combine their medication for hypertension with a diuretic for those patients that may have a stage of hypertension that requires simply more than just one drug for reduction of their high blood pressure.
On the other hand, some cardiovascular combination medications are absent of a diuretic. Yet diuretics remain the first line choice of treatment based on the results of the ALLHAT trial, regardless, and should be included in any combination drug chosen for the treatment of most cardiovascular disease patients with hypertension that requires more than one drug for control of their high blood pressure, according to others.
More convincing is that the JNC-7, a report that concludes which medication is best for the prevention and treatment of high blood pressure as well as other cardiovascular conditions, concurs with the results of the ALLHAT trial, and as a result, the JNC states in their report that diuretics are preferred for first-step hypertension therapy, and acknowledge that this class of medications is presently under-utilized. The Report is rather thorough, and is developed by the American Heart Association. The report is also recognized and respected by health care providers who treat cardiovascular disease.
I’m comfortable as a layperson in suggesting that the cardiovascular experts should and in fact be obligated to continue to make others aware of the results of the ALLHAT trial, and should also convince other health care providers that diuretics should be the preferred choice of medicinal therapy for the medical conditions illustrated and treated in the ALLHAT trial.
Often, such a diuretic is combined with another medication to reduce hypertension, such as a beta blocker, although some believe according to clinical evidence that beta blockers may increase the incidence of diabetes.
In particular, thiazide diuretics are most beneficial for those hypertensive patients that are African American, the elderly, obese patients, those with heart failure, or those with chronic kidney disease, others have concluded. And it should be noted that this type of diuretic depletes potassium from the patient taking this drug, so caution should be utilized regarding this issue, as well as the patient who is prescribed a diuretic should be informed of additional possible side effects associated with a thiazide diuretic, although they are infrequent.
Along with the cost savings that could amount to billions of dollars saved annually, diuretic medicinal therapy would ensure both health care provider and patients that they are receiving the proven and ideal treatment which will control their hypertension, and delay the progression and prevent additional cardiovascular events with this particular drug. This is most noticeable in those patients who require medicinal treatment for their hypertension long term, as well as those who are elderly.
Unfortunately, it appears what may be one of the most authentic trials conducted has been and continues to be largely disregarded or not recalled by those who treat hypertension- possibly due to the forces of others whose objectives are of a different nature besides the restoration of the health of others as it relates to the diseases addressed in the ALLHAT trial. So again, it appears in this situation that promotion has been a more powerful force than what science has provided.
www.amhrt.org
Dan Abshear
Posted by: Dan | March 01, 2009 at 03:12 PM