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. 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.
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?