Back in the late 1980s, many gay men—like me—had two sets of medical records. At the outset of the HIV/AIDS epidemic, no one wanted his chart to show an HIV diagnosis, nor the fact that you had simply taken the HIV antibody test, because that meant—some way, some how—that you considered yourself at risk for the disease even if your results proved otherwise. Notably, we feared this information becoming known to health insurers, even our employers, sometimes our friends and families, because of the very real possibility of discrimination. That's why my doctor kept two sets of records: the one on the right side of my chart was the official one; the other side harbored our secrets.
In the quarter century since the dawn of the HIV/AIDS epidemic, nearly all of our fears have come to pass.
We now live at the birth of a new age of medicine where cutting-edge technologies can provide insights and potential benefits only dreamt of a generation ago. These days all kinds of science fiction-like tests and procedures are available from labs, promising deliverance from heart disease, lung disease, many types of cancer, kidney stones, gall stones, aneurysms, osteoporosis, arthritis and so many others. One such outfit in Charlotte offers full body scans, as well as heart and lung scans, advertised a la Madison Avenue on the Web as "simple and painless." No problem, you can smoke, drink, eat whatever you want; one easy test will tell you whether you have a potential health issue. A colleague of mine, an inveterate smoker, hopes his lung scan will be clean so that he can continue puffing (and huffing). Meanwhile, in southern California, two people getting the same scan can qualify for a 10 percent discount off the pricey rack rate. Now, that's controlling the cost of health care.
Let me step back about a year ago and tell you how the new age of medicine ensnared me. As I was turning 50, my doctor recommended a heart scan as a preventive measure. Although usually riddled with anxiety about things medical, I had no worries about the heart scan: I'm constantly "humored" (read: ridiculed) by friends about my strict adherence to a low-fat, reduced sugar, lean protein and whole food diet ("Can you make that without butter, cream, potatoes, hormones or antibiotics, please?") and a near daily exercise regimen ("If it's Tuesday, it must be yoga!).
Honestly, my anxieties were misplaced on just about every level.
I underwent the 64-slice CT scan of the heart, which cost me $1,100 out-of-pocket and was not reimbursable by my insurance company. Bam, came the first news bulletin: The exam revealed significant soft plaque in my arteries, which the radiologist described poetically as "eccentric." Still, I was shocked to learn that I had scored in the bottom 25 percent of men my age. Now I pop a cholesterol-lowering pill and a baby aspirin every morning.
Not surprisingly, I give the heart scan two thumbs up since the knowledge accrued from the procedure may have saved me from a heart attack. I heard my inner voice whisper: "Yes to medical science!"
But, I was also about to apply for long-term care insurance and realized that I did not want my early stage coronary disease to be included in my medical record. I also contemplated a day when I might leave my job and need to apply for individual health insurance. Ironically, my physician's laptop makes her job much more efficient—just click and drag and she's done! But, there's no way today to safeguard any of your personal information, even if you want to (and you dare run afoul of the insurance companies, who would have a legitimate reason to reject you before you say "whoa").
Even more troubling, a second headline resulted from my heart scan. The very precise CT had also picked up two small nodes in my lungs. "There's an 80 percent chance that these nodes will be nothing," my doctor said. "They're very common, usually benign, often hinting at disease that is not really present." They even have a name: incidentalomas. On the other hand, she admitted cancer could not be ruled out. "But it would be very early."
That wasn't so comforting. What was I supposed to do? She said: Wait six to 12 months and get another CT.
I waited. I fretted. I counted to nine months and had the follow-up procedure, which was at least covered by my insurance this time. After waiting another four days for the results, they came in. Good news: Nothing had changed. In fact one of the nodes looked smaller.
But this entire episode made personal the issues inherent in this new age of medicine: How useful are these kinds of cutting-edge medical tests? Are they affordable and accessible? Harmful? Will they violate our privacy and lead to new forms of discrimination?
Dr. Richard Liebowitz, formerly at Duke Medicine and now vice president of medical affairs at New York-Presbyterian Hospital, questions the usefulness of these new adventures in science. "There's a trend toward more and more tests, more invasive tests, and more side effects from these tests," he told me. But he also raises other disturbing side effects: "Is this test accurate? Can I trust the results? Can I change the natural course of the disease?" And, like many in health care, he worries about privacy and discrimination issues.
"All screening is not good," Dr. Liebowitz says flatly, "and there's the possibility of significant side effects." With the body scan (or even a heart scan like I had), there's concern over unnecessary radiation doses. A full body scan is equivalent to exposing a patient to 500 chest X-rays. While the link between radiation exposure and cancer can't be precisely determined, there's no question that the more radiation we're exposed to, the greater our cancer risk. Which leads us to this inherently confounding question: Are the very tests we use to diagnose actually increasing the likelihood that we will develop one of those very conditions?
Then, of course, there's the question of the availability and affordability of many of these 21st-century tests. The high price tag of these procedures isn't covered by insurance companies for widespread screening, nor are they affordable as an out-of-pocket cost to most. Dr. Roberta Lee, medical director of the Center for Health and Healing at Beth Israel in New York, thinks that's unfair. First, she says, we have to determine the value of a test to the public, and then if useful, everyone should have access to it. "It's a socio-economic issue," she adds.
"There's no end to what you can learn," says Dr. Lee. "But you can just do so much. But toward what end?" Dr. Lee, who studied with the godfather of integrative medicine, Dr. Andrew Weil, points to the new wave of personal genetic testing, now widely available, as a prime example of this kind of knowledge that may not be actionable. Of course, the come-ons don't help. One such provider, deCodeMe, makes this claim: "For only $985, we scan over one million variants in your genome." That sounds more like a RonCo ad I saw recently, promising a "25-piece Six Star Cutlery Set FREE!" (The shipping and handling was free; not the knives.) DeCodeMe, on its Web site, promises you can calculate your risk for 18 diseases—favorites like macular degeneration, breast cancer, colon cancer, multiple sclerosis, Types 1 and 2 diabetes and, the granddaddy of them all, Alzheimer's.
But the issues here are also complex and manifold. Genetic testing for a particular condition is at best predictive. For instance, not every woman with a breast-cancer related gene would develop the disease. A woman with a 75 percent chance may remain healthy and a woman with a 25 percent risk may eventually develop a malignancy. For Dr. Lee the predominant question is: "How likely is it that this genetic marker will express itself?" Patients need to find doctors who can translate this issue for them "since there are no uniform standards," according to Dr. Lee. There's also the question: Once you understand the potential risk, what can you do about it? "If you can't do anything about it, you might as well not do the test," Dr. Lee says.
Then there are weighty privacy issues. Results of these tests are often placed in our medical records with the possibility of information being wrongly shared with employers or insurance companies. Says Dr. Liebowitz: "It's a huge concern regarding insurance." He and others worry that we'll see a wave of genetic discrimination by insurers (as a way to cut costs and cherry pick members), on the job (for the same reasons), even in our personal relationships. Just last week The New York Times reported that the "much-anticipated benefits of personalized medicine are being lost or diluted for many Americans who are too afraid that genetic information may be used against them to take advantage of its growing availability."
The consequences may also play out in our own circles. Looking back to the onset of the HIV/AIDS epidemic, some gay men simply wouldn't date those with HIV infection because of their fear of contagion; many heterosexuals had their own erroneous concerns. With these kinds of data, would you shy away from a serious relationship because a potential partner was known to be at high risk for Alzheimer's or heart disease? The implications, while still unknown, are frightening enough.
Not surprisingly after my last CT exam, the radiologist suggested yet another follow-up in a year "just to be sure." More radiation. More anxiety. More cost for my insurer and me. I don't think so. And it pleased me that my primary care physician agreed. Clearly, science has its limits in what it can tell us, while its vast powers continue to expand. Dr. Lee acknowledged that medicine is "ahead in dog years and we haven't thought through all the implications of what we can do." I fear she's right. Having come of age believing in the power of medical science and the righteousness of its practitioners, it's not easy to forge another path. But just because the science is complex, it doesn't mean that the answers need be.