Don’t worry, it’s not too long a tale. It’s not even all that terrible in the great scheme of things. It is however, typical of how we dispense health care in America today, or should I say fail to do so.
Some people (i.e., those who oppose what they call with derision “Obamacare”) fear that under health care reform our right to receive proper medical treatment will be rationed. They claim that government run bureaucrats will make all the decisions about whether we can receive certain treatments or medications rather than our doctors and, most importantly ourselves, as patients. These people say they are happy with the current system of health care which, except for those over 65 (Medicare), federal government workers (including the military), veterans, members of Congress and the very, very poor (Medicaid) is completely in the hands of the private sector.
That is my situation. I’m privately insured. And I was denied a health care option yesterday my doctor and I determined was in my best interest.
My family is covered by a private insurance company which I will not name here. Not because I am afraid of any retribution. After all, we already pay them thousands of dollars in premiums for health care and I’m sure they want to keep milking us for every health care dollar they can.
Besides they have already determined that, despite my doctor’s best medical judgment I require a particular medical treatment. No, I won’t name them because the action they took in my case is all too often the response of other insurance companies who sell health insurance to those of us not lucky enough to obtain our health care from the government.
But let me back up for a moment for a little history. In the early 90’s I began to experience severe gastrointestinal and arthritic symptoms: abdominal pain and distention, nausea, diarrhea and constipation, and inflamed joints. My worst flare up led to chills, high fever and incessant vomiting (which invariably led to hospitalizations for suspected gastroenteritis or inflammation of the digestive tract).
I also suffered from skin rashes that at their worst I would itch until my skin formed bloody little cysts. I was hospitalized several times during this period, with these symptoms. At one point when I was hospitalized a sonogram revealed that I had gall bladder disease. Not the kind that results from gall stones. No this type of gall bladder disease is called Acalculous cholecystitis (that simply means gall bladder disease without gall stones, and is relatively rare. It comprises only 5-10% of all chronic gall bladder cases and is usually found in people who have sepsis or gangrene following surgery or among critically ill patients. Why I, a forty something lawyer, with no history of belly surgery, had this disorder was never explained to me. My surgeon did tell me that when my gall bladder was removed it was 70% inflamed and the tissue was rotting.
Another time I was admitted to the emergency room with severe joint, chest and shoulder pain and the x-rays revealed that a significant amount of air had leaked into my chest cavity, probably as a result of inflammation of my lungs which had blistered and perforated. This is what is known as Pneumomediastinum, another unusual condition.
During these years I had numerous tests performed and the consensus opinion determined I had Crohn’s disease, an autoimmune disorder which often affects the intestines and also causes severe rheumatoid arthritis symptoms in the connective tissue of joints, tendons and ligaments. The standard treatment was high doses of a corticosteroid known as prednisone. I would take high doses of prednisone in cycles of 3 to 4 months.
Although there was some initial improvement in my symptoms, as time went on I took higher and higher doses of daily prednisone to achieve less and less benefit. My highest dose was 120 mg of prednisone daily. By the way, here are some of the side effects of prolonged usage of high doses of prednisone (a relatively cheap drug to use for autoimmune disorders since it is no longer under patent):
Common side effects include mood swings, increased hair growth, facial “mooning” [Your face swell and becomes very fat and rounded), increased appetite, night sweats, acne, headaches, weight gain, and many more too numerous to list here. Long-term use could result in steroid dependency and bone density loss. […]
It may quickly stop a flare in its tracks, but at the price of altered physical appearance, mental instability, and other serious health risks.
I had all of the above side effects. My irritability and mood swings while on the drug almost cost me my marriage. My weight ballooned from 160 lbs to over 200 lbs. I had trouble sleeping and required medication to knock me out. Some days I was manic, some days I was very depressed. You never knew what you were going to get. I’m told I was a very unpleasant person to be around, especially the higher the dosages of prednisone became.
Eventually, the doctors decided that based on the testing that had been done and my medical history my only option was surgery to remove the ileum, that portion of the small intestine which connects to the large intestine. My doctors believed the focal point of my Crohn’s disease was located there (this is one of the usual places where Crohn’s manifests itself) and that surgery removing the ileum and part of my large bowel was my best option. I was told this had a fifty-fifty chance of curing me.
When I awoke from surgery, however, I was told that while the surgeons observed a great deal of peritoneal inflammation, I did not have the specific inflammation that Crohn’s disease produces. Thus I had no removal of my colon and no cure of my chronic illness. I had been misdiagnosed. This was a devastating result. I was forced to retire from the practice of Law because stress triggered the severe flare-up of my symptoms.
Nonetheless my primary care doctor never gave up on me. He continued independent (and uncompensated research) into what might be causing my illness. He helped me get approval from my then insurance company to be seen by specialists in North Carolina and the Mayo Clinic. Although their diagnoses would also prove to be wrong I tried the treatments they suggested with no improvement. I did however limit my use of prednisone, and saved my marriage.
Finally my doctor discovered a possible diagnosis of a rare condition or related syndromes now commonly referred to under the acronym TRAPS which stand s for Tumor necrosis factor receptor-associated periodic syndrome, a long winded medical phrase. Here is how the medical literature describes it:
Tumor necrosis factor receptor-associated periodic syndrome (TRAPS) is an autosomal dominant inherited condition of periodic fever and pain. Most patients are of northern European descent. The attacks manifest as fever and pain in the joints, abdomen, muscles, skin, or eyes, with variations across patients. An acute-phase response occurs during the attacks. Patients with TRAPS are at risk for AA amyloidosis, the most common targets being the kidneys and liver. […]
TRAPS is the first condition for which naturally occurring mutations in a TNF receptor were found; the mutations affect the soluble TNFRSF1A gene in the 12p13 region. In some patients, the pathogenesis involves defective TNFRSF1A shedding from cell membranes in response to a given stimulus. Thus, TRAPS is a model for a novel pathogenic concept characterized by failure to shed a cytokine receptor.
Tumor necrosis factor or TNF is an antibody, a protein your body produces naturally that fights cancer and certain bacterial toxins. Unfortunately, in TRAPS patients a defect in the cytokine receptor sites all cells have results in TNF attacking healthy cells.
My doctor got me into a pilot research program at the National Institutes of Health (the NIH, where the insurance company was not involved because my care was paid for by the “FEDERAL GOVERNMENT”. The NIH doctors, some of the best minds in the country, after examining me, agreed with my doctor that my most likely diagnosis was indeed TRAPS. It explained all the symptoms I experienced and the reason why continued usage of ever higher doses of prednisone became ineffective.
You see, TRAPS patients develop a tolerance to prednisone, and so continuing to use it over long periods of time only makes matters worse. I know use it in short three day bursts of 60 mg doses whenever I feel severe symptoms coming on (i.e., vertigo, severe nausea, pain, fever and chills) to short circuit the flare-ups of my condition which I continue to experience.
This approach, while cheap, is not a perfect solution, however. The continued risks of using prednisone in this way include psychological and physiological changes, loss of bone density, and increased risk of infection. Indeed, at this moment, because I took prednisone over the weekend I contracted a very nasty cold and sinus infection which is making it very hard to finish writing this story.
And unfortunately the use of prednisone in this way does not prevent flare ups from continuing. At best it only prevents a full blown attack thus keeping me out of the hospital where I would be treated with – wait for it – intravenous corticosteroids such as Solu-Medrol.
My doctor would like to receive approval for me to try one of the new monoclonal antibody medications in an attempt to relieve my symptoms and give me the chance of a normal life where I could return to work. This is what the monoclonal antibody medication my doctor recommends I try might do to help me:
Infliximab (INN; trade name Remicade) is a monoclonal antibody against TNFα. It is used to treat autoimmune diseases. […]
Infliximab works by binding to tumour necrosis factor alpha (TNFα). TNFα is a chemical messenger (cytokine) and a key part of the autoimmune reaction. Originally, it was assumed that Infliximab works by blocking the action of TNFα by preventing it from binding to its receptor in the cell, and for the action of infliximab in rheumatoid arthritis this still seems to be true. Another TNFα-neutralizing medication however, etanercept (Enbrel), is worse than a placebo in Crohn’s disease and thus TNFα-neutralisation is not responsible for its powerful action in the latter disease.[3] As infliximab causes programmed cell death of TNFα-expressing activated T lymphocytes, an important cell type mediating inflammation, but Enbrel does not have this activity, now it is generally assumed that resolution of activated T cells by Infliximab explains its efficacy in Crohn’s disease.[4]
Unfortunately, these new monoclonal antibody drug therapies are very, very expensive. I told my doctor that there was no way in hell my insurance company would approve these treatments for me. I know. I used to work for a law firm that represented our local health insurance providers.
The only reason I was accepted to be examined by specialists in North Carolina and The Mayo Clinic was because my firm represented the insurance company who insured my family. In other words I had connections. I had pull. The CEO of my then insurance provider employed a former partner of our law firm as in house counsel. And even then it had taken a great deal of effort to get me approved for the limited number of tests that were run by these specialists, and a battle afterward getting the insurance company to pay for the treatments that had been approved.
I have a different health insurance company now, and no ability to call in any more chips. So I told my doctor that he could go ahead and try but I doubted they would approve me for this medication that he thought might help me: Remicade. Yesterday I was proven correct.
After seeing nmy doctor for my cold and sinus infection I received a phone call from my insurance company representative, a very nice young woman who I will not name for obvious reasons. She called to inform me that I didn’t meet the insurance company’s criteria for use of remicade and so the request my doctor made for a THREE MONTH TRIAL (yes, that was all he was asking for – three months to see if it might work) of Remicade had been denied. I was informed that, of course, my doctor and I had the right to appeal this decision TO THE INSURANCE COMPANY’S REVIEW PANEL if we felt their initial decision had been in error.
I ask you, my dear friends, what do you think are my odds of having the insurance company reverse its decision to overrule my doctor’s best medical judgment as to my proper course of treatment ?
I also ask you, if this isn’t rationing of health care already, what is?
Sincerely,
Steven D
The problem, Steven, is that the vast, vast majority of people will never experience or have a loved one experience the type of circumstances which you have personally encountered. And that fact allows a huge swath of people to scream in opposition to any health care reform efforts without ever thinking of the consequences of their opposition or how it effects other real, living, breathing, loving human beings. And they don’t see the paradox here at all.
I think it is probably safe to say that somewhere out in “Real America”, say, in a crowd of teabaggers for example; there is probably someone screaming in opposition health care right now who will suddenly find out in the very near future that their spouse has an unusual bone cancer, or their 10 year old granddaughter is found to suffer from a rare and deadly form of childhood leukemia, or that possibly they themselves are diagnosed with something like colon cancer.
And maybe soon after the diagnosis they lose their job, or their child loses their job and with it, their health insurance. And that person will be faced with the only real option which might be available to them right now, which is COBRA. And they will sit at their kitchen table, staring at their bank statements and other savings and say, “There is no way I can afford to pay for this”. And they will know that deep down inside all they can do is divest themselves of any assets they have and hope a positive outcome occurs before the money runs out. And if not, they will join the millions of other who lose everything, file bankruptcy and find themselves broke and destitute and likely forever jobless. Not to mention that the medical condition that started it all is still there. The elephant in the room which you are powerless to fight.
And suddenly they will have an epiphany. They will realize that, despite doing everything “right” in their lives; playing by the rules and working hard and honestly for what they had, that is just not enough. Sometimes circumstances get the best of you or your loved ones, despite living the rules and being responsible.
And I seriously doubt that after that point this person will be so enthusiastic in their opposition to health care reform. Because it will now be something which isn’t just some “freebie” that the deadbeats and lazy ass “other people” think they are owed. It will be something which likely means the difference between life and death for their spouse, their granddaughter or, very possibly, themselves.
And it will suddenly become very personal, very emotional and something worth standing up for. I have seen it in our own family. Because it has happened just that way. It’s funny how that works. When one of those “other people” is your loved one, it seems to make all the difference in the world. That black and white world they so clung to, where everything was comfortably divided in their minds and the world made perfect sense, suddenly turns all kinds of shades of gray. That, I think, is what has really gotten lost in this whole health care debate. We are talking about real human beings. Not caricatures, not slogans, not inanimate flesh and bones. We are talking about real people. And if you haven’t been personally effected by this issue, like you have and like my family has, it is not because you are a better or more worthy person. It is because you, up to this point in life, have been mostly lucky. But today or tomorrow or next week could be when your luck runs out.
And I can say, with confidence, that their attitude will be monumentally different from that point on.
I hate to agree with you, but I agree with you.
Richard, it depresses me enormously to say that I don’t feel the anti-reform teabaggers are really that important — since the anti-reform movement is so highly suspect, when so many protesters were paid, after all. Consider the Florida protests in the 2000 election. I believe they were called ‘rent-a-mobs’ then.
But of course, the presence of the fakes calls out the presence of the real thing, when the real thing has been properly inspired through their favored media outlets — which, as we know, have nothing to do with interested health care industries.
The anti-reform crowds are doing the job that progressives did for liberals. Industry-employed lawmakers have said to them: ‘I agree. Now go out & make me not do it.’
In a situation wherein the angry crowds are basically just window-dressing, their circumstances as individuals ultimately are not that important. As we also know, it’s no big job to cause people to get active, let alone vote, against their own interests. While they continue to hobble together their own pitiful health care — sweat, bleed & die for it, because, after all, we’ve got the best health care in the world because we’re the best country in the world. If it’s not working for us, it’s our own damn fault. But hell no, we won’t have the government in charge of our Medicare!
A blind baby could see an ideal environment for exploitation here.
What I’m saying, ultimately, is that if the anti-reform teabaggers didn’t exist, the industry would have to invent them.
Meant to say: The anti-reform crowds are doing the job that progressives did for Roosevelt.
Steven, I’m sorry to hear your story.
I’m sorry for us all, because we’re citizens of a nation without a health care system.
The difficuty of the debate is that we’re laboring under the premise that we have one.
Kind of like the premise that we live under a democracy.
What we have instead are a number of industries & their representatives. That’s all.
(Come to think of it, this goes for the democracy idea too.)
Serious debate, let alone remedy, can’t be undertaken productively when the entire basis of discussion is a matter of collective fantasy.
It’s rather the opposite of the story of the blind men — we feel the pieces & think we have an elephant.
Here’s hoping we’ll all receive relief as soon as possible.
I include my very best hopes for you.
Alternately: if all we have is the industry, then actually
health care = industry
in every statement. We think health care means health care, but what it means is: the health care industry.
So: actual health care isn’t even being debated.
What’s being debated & addressed for remedy is the health care industry: how can the industry function more efficiently? How can costs to the industry be reduced? How can we widen the industry’s customer base?
This has nothing to do with our health. If the industry’s main purpose was providing washing machines, the debate would still be the same.
What’s being debated & addressed for remedy is the health care industry: how can the industry function more efficiently? How can costs to the industry be reduced? How can we widen the industry’s customer base?
This is absolutely spot on. As the process has unfolded, the current legislation should be renamed “The Health Industry Enrichment Act.” Initially, there were some efforts to throw in some benefits for the peasants so that we would not feel so obviously screwed. But, these are being stripped away. There’s going to be some smoke and mirrors with subsidies so that people might not notice that they are being double-billed — once directly and again thru taxes — while the corporations slowly bleed us to death.
I find it interesting that, after several centuries of improvements to medicine in many areas, leeches continue to be utilized in the heath care system. The only difference is, now they are greedier and much larger in size.
.
FDA alert TNF blockers.
I read the drug Remicade was provided in Belgium only to children under national health care provision. Adults had to cover costs themselves. In the Netherlands, it’s considered an expensive treatment and only after an evaluation can it be prescribed free of any charge. Usually this means a study for result of the illness with other medicines first. It’s a troublesome procedure to be sure. Enbrel and Remicade are expensive but certainly effective. All the best to you Steven, hope you will get the best treatment and some relief soon.
"But I will not let myself be reduced to silence."
It is certainly true that you have to experience our health care system upfront and personally in order to comprehend that everyone who tries to use the system will be rationed in one sense or another.
Whether it is the cancer patient who is denied a regularly scheduled infusion and must pay with a credit card all the way up the hill to your care, all it takes is a visit to a caregiver for you to realize you are indeed at their mercy. And since mercy is not a recognized word in the industry, you’re simply SOL.
Have you tried these guys ?
The health insurance industry’s calculations are based on the idea that health and health care needs are exactly the same for every individual — one plus one equals two — as reliably as mathematics and statistics.
But human beings don’t work that way. It’s why all medications come with warning labels — because every individual’s metabolism is different, reacts to pathagens or pharmaceuticals differently, and one size healthcare does NOT fit all.
Unfortunately, the entire “healthcare industry” — which is really the insurance industry — is based on the “average” patient, whose health care needs fall within a prescribed range of costs and results. But most people will fall outside that range at some point in time — and some people have health care needs that are way outside that range. But in a for-profit health care system model, everything is formulated around meeting the “average” range — and excluding those individuals who fall outside it.
Health care is about INDIVIDUAL PEOPLE — children, mothers, fathers, grandparents, sisters, brothers, cousins, friends. In all the discussions I’ve heard from the Congress, very few have been about the personal cost of our failing health care system to INDIVIDUAL PEOPLE. It’s been about the cost in terms of dollars — not individual people’s lives, or quality of life.
If there’s any amusement to be had here, it’s from the idea that the average person is basically a static entity. Nothing ever changes significantly.
This is why you can be ‘average’ one day, but after a particular diagnoses, you cease to become average.
The ideal health-care consumer (not ‘patient’, not ‘client’, not ‘person’) is probably either a) a statuette or b) dead. Very predictable.
🙂
The line that always sends me over the edge is “my we’ve never had that happen before, we’ve never seen that before” it always reminds me of House on tv where nightly he has to kill the patient several times before he either stumbles on the fix or just wheels them down to the morgue. Meanwhile he’s spent zillions on dozens of scans and tests that no insurance company would ever agree to.
Is that what they call ‘reality television’?
I really can’t tell what House is all about. But it does underline discussion here where our health care system is based on prolonged ineffective but costly treatment rather than good diagnosis & successful treatment. Just like House, you don’t get cured or rolled down to the morgue until all your insurance benefits have been used up.
OMG! I’ve never realized exactly why House struck me as being so satirical… until now. He characterizes the health insurance industry! All his co-workers say he’s so brilliant while he almost kills his patients — repeatedly — and orders up increasingly expensive tests until he incidentally cures them. And, to top it off, he’s dependant on the pharmaceutical industry! LOL!
It’s a tough call, but the fact that you write for a nationally-read blog does give you a bit of pull. Naming names might not be the worst move. On the other hand, if you think you have a chance before the review panel and that naming names would hurt that chance…
Something to think about.
This is something Olbermann would certainly put on his show.
I am guessing this is worthless advice in your case, but worth a shot….
I use Enbrel (not an option for you I know, but another horribly expensive drug in the same class)and the folks who make it have been actually amazingly good about getting me both originally approved for Enbrel (took five months) and this year covering nearly ALL (but $60)of my out of pockets. Point is, if you haven’t already, you should contact the drug company directly for help. They have a huge incentive to get you covered and once covered to help you pay for it. For me at least, it’s a rare case where my interest directly coincided with behemoth, price gouging drug company who is more than willing to fight like hell on our behalf.
I agree.
Steven, you have a rare condition, and these companies usually have compassionate use or patient assistance programs for people in your situation.
Here’s what I found with a little googling:
REMICADE ® (infliximab) PATIENT ASSISTANCE PROGRAM
P.O. Box 221709
Charlotte, N.C. 28222-1709
866‐489‐5957 (p) 866‐489‐5958 (f)
Steven, email me if you need help finding more information or other possible payment options.
No in-depth analysis or commentary here — just hope everything works out okay for you and your family, Steve. The shell-game that we call health care in the U.S. is often the greatest source of social injustice (okay, maybe a little commentary). Get well, Steve!