Of provident kidney stones, health insurance and a CT Scan that may have saved my life

As we bid farewell to 2011 while ushering in the new year, some thoughts about health care — my own — emerge. I underwent major surgery this last year, having had roughly 15% of one kidney–or, more precisely, the cancerous portion of one kidney– removed. I chose to blog about the experience, chronicling the process from the onset, back when the tumor was initially thought to be a kidney stone or a cyst. But found early, it was small, they say they got it all and that it had not spread. I was lucky. A relatively rare form of the disease (roughly 50,000 cases per year), the survival rate for kidney cancer is not great because it is largely asymptomatic and is not generally tested without a family history for such.  Often, by the time someone wanders into a doctor’s office with complaints of an aching lower back or bloody urine, the tumor has grown to the size of a baseball, the cancer has spread, and the prognosis is not optimum. My tumor was found, as is so often the case, “incidentally” as they were looking at something else.

And that something else has me thinking; without it I’d be walking around with a ticking time bomb firmly ensconced and concealed in my kidney.  Which brings me to July of this past year when I awoke torn by excruciating pain from what I was to later discover were two kidney stones. Wave after wave of fortunate pain brought me to the emergency room. A CT scan discovered the stones–and something else– that ultimately turned out to be that cancerous tumor approximately 2.2 cm, lying in wait.

And there’s the rub. I had health insurance. Without health insurance I might have still gone to the hospital–the pain was immense– but I would have refused the CT scan.  I know of what I speak. A lack of health insurance is a state of affairs and a mindset that is distinctly different from that of having health insurance: as one deprives Peter to pay Paul “home medicine” takes on new meaning. And if forced to see a doctor, one minds the bottom line always ready to refuse treatment, especially avoiding diagnostic tests such as x-rays, CT scans and MRIs as they are the well traveled road to poverty if not bankruptcy.

And there it is. Without health insurance I would have refused the CT scan which may well have saved my life.

Instead, I ultimately had one of the nation’s top surgeons (the brilliant Dr. Paul Russo, most recently described by Maureen Dowd in the NY Times as “exuberantly blunt”) at Sloan-Kettering pluck the ticking time bomb from my body, while saving the affected kidney and me.

In the hands of a less skilled surgeon, my entire kidney may have been removed (it’s easier), and even if alive I’d have spent the rest of my life at a  increased risk for hospitalizing events from chronic  kidney disease, heart disease, and even hip fractures. The bill for my stay and surgery was roughly $27,000; my co-pay merely double digits (thank you Cigna).

And as I sit here reflecting on my good fortune and the providence of kidney stones timely sent, I cannot help but think of all those men and women across America without health insurance (or with junk insurance) who are left to face this coming year with health issues and hard economic choices each day–choices which will lead many to practice “home medicine” when faced with excruciating pain and the hidden harbingers of disease. Choices which will leave prescriptions unfilled. Choices which will lead many to refuse that costly x-ray, CT scan or MRI which might have saved their lives.

There but for the Grace of God–and a job with good health insurance.

And that’s not hyperbole: it’s a new year; it’s estimated that 45,000 people in America will die in it due to lack of health insurance.

Direct to Consumer Genetic Testing — The Need for Early Filtering of Genetic Information

[Ed. Note: We are pleased to welcome Professor Gaia Bernstein to Health Reform Watch. Articles about her recent scholarship, "Over-parenting," may be found at the ABA Journal and The New York Times Magazine.]

Genetic testing for adult onset diseases used to be mainly a medical service. In most cases a person who had a certain genetic disease that was prevalent in her family would go to test to see if she carries the genetic mutation. For example, a woman who had several cases of breast cancer in her family would test for the breast cancer genetic mutation BRCA1/BRCA2 to see if she carries the mutation and has a high probability of getting the disease. But, the proliferation of direct to consumer genetic testing changes the nature of the service to a consumer service. Companies like 23andme and Pathway Genomics (who was planning to start selling its kits in Walgreens) offer consumers the option to buy packages of tests (ranging from 25 to over a 100 conditions). Consumers often buy the tests to satisfy their curiosity or they may even receive them as a gift. People purchasing the testing packages usually do not consult a medical professional when deciding to undergo the tests and receive the results alone by accessing a website.

Yesterday I spoke before the FDA, which is considering regulating direct to consumer genetic testing. My presentation was based on a symposium piece I am working on. I argued for the need for a medical professional to guide people throughout the process and advise them not just on the interpretation of the results but also earlier in the process to determine what genetic information they actually want to have.

Interpreting the results of genetic tests is not easy. Unlike other over the counter tests, like a pregnancy test, which gives a clear positive or negative result, genetic tests are about probabilities. Even a person who tests positive for a certain mutation may still not get sick depending on other non-genetic factors. People have a hard time understanding the results of genetic tests and for that reason there have been many calls to require the guidance of a medical professional for the delivery of the results.

But I believe focusing on the interpretation of the results is only half the issue. It is important to have professional guidance also at the outset to determine what tests to undergo. A medical professional should guide individuals and tailor the panel of tests to the individual who desires to test. Why is that? Well, first of all, some people, if they get a chance to give it some thought, may not want to know all their genetic information. For example, a person may prefer not to know that he is likely to get Alzheimer’s at a young age. Secondly, not all genetic information is made equal. Some genetic tests do not convey that much useful information. For example, a positive result in some tests may only demonstrate a slightly higher likelihood of getting the disease than the probability in the general population. Eliminating such tests at the outset will facilitate the interpretation of the results. It would be possible to focus on the truly important positive results at the end of the process.

To achieve all this it is important for the law to require the guidance of a medical professional who is not a representative of the genetic testing company. A medical professional working for the genetic testing company may have good knowledge of the tests, but could have an interest in having the consumer purchase as many tests as possible. This could place him in a conflict of interest with the consumer who could be best off by purchasing a more limited panel of tests tailored specifically for him.

Cross-Posted at PrawfsBlawg

A Trip to the Cardiologist, A Lipitor Future, and “Why Doesn’t My Health Insurer Want Me to Know if I’m Likely To Have a Heart Attack?”

I visited with a cardiologist last week. My inadvertent but no less harmful dalliance with two different kinds of drain cleaner having set off an entire chain of long past due check-ups. A little more than two years shy of fifty, I listened intently as I was told that although I had had a good run, a diet composed of grease, chocolate, quick carbs, coffee and unfiltereds was simply not going to cut it as I ventured into the last half of life (last third is more likely, but also more painful to consider– and I suppose for the doctor, harder to say).

I now look forward to a battery of tests. The first, done today, is designed to detect artery calcification: “Coronary calcium is specific for atherosclerotic plaque and can be detected with high sensitivity and accurately quantified by computed tomography (CT) to help predict future cardiac events related to coronary artery disease.” I had to pay for the test out of pocket as it seems my insurance company deems such screening unworthy of coverage– despite the tests highly vaunted predictive power. Quite a few people in this country die each year from heart disease–hard to understand how it wouldn’t be worth the $318 to know who was vulnerable–and if unchecked, destined for the very expensive Intensive Care Unit.

Tomorrow brings an echocardiogram and my first ever stress test. I readily assented to the tests as it is good, I suppose, to know where one stands. But in addition to testing and making dietary changes, the doctor also wants me to start taking Lipitor. A statin prescribed to lower cholesterol. I did not react well.  The prescription it seems is, in more than one sense, a life sentence.

And I am generally suspicious of the pharma zeitgeist. And terribly so as it concerns myself.

The prescription is not, in this instance, a treatment for an acute condition, it treats the endemic. If one has risk factors, it is prophylactic and is prescribed to reduce the risk of heart attack, stroke and other heart diseases. It is doubtful whether once I start taking this drug I will ever stop. There is no foreseeable time (while alive) that I will wish to stop reducing the risk of heart attack or stroke. And that I suppose is the essence of the onset of age– piling up prescriptions. A daily regimen that will follow one to the grave–only the dosages or the brand names changing as each day welcomes a regimen of pills. In short, this prescription feels like the onset of dependence. The forward guard, if you will. A harbinger of a pharmaceutical future.

Seeing my, shall we say, chagrin, the cardiologist told me that, like over 50% of the cardiologists he knows, he takes a statin. “We’ve seen the data.” Another recently told me  “Yeah, I take it. They should put it in the water.”

And so I will take this drug. But I am not happy. I am loath to think of myself in these terms. Only 12 or so years ago I played starting defensive tackle on a semi-pro football team. Soon I will be discussing my cholesterol numbers and God only knows what other numerical health indicators at cocktail parties.

The essence of good health is simply not having to think about it. It is not an issue. I have to think about it now. And I have a sneaking suspicion, that like when I first became a parent, the terms of my existence have just changed.

UPDATE

Photo credit to incurable_hippie.