President Obama gave his commencement address at Notre Dame last week, and not surprisingly the mainstream media used it as an opportunity to focus on the topic of abortion, with the usual suspects touting their usual views. None of which is my concern here. Instead, I was caught by surprise by a quick reference the president made about the different assumptions that create the framework by which people understand today's political issues. He noted:
The soldier and the lawyer may both love this country with equal passion, and yet reach very different conclusions on the specific steps needed to protect us from harm. The gay activist and the evangelical pastor may both deplore the ravages of HIV/AIDS, but find themselves unable to bridge the cultural divide that might unite their efforts. Those who speak out against stem cell research may be rooted in an admirable conviction about the sacredness of life, but so are the parents of a child with juvenile diabetes who are convinced that their son's or daughter's hardships can be relieved.
I have no quibbles with anything he said, but I was curious as to who was advising the president about using the phrase "HIV/AIDS" rather than either "HIV" or "AIDS." Why both?
To understand what's at stake here we need a little history lesson. In the spring of 1981, gay men in Los Angeles and New York City began falling ill with what at the time were genuinely weird diseases--lung infections from a fungus called pneumocystis carinii and a skin cancer known as Kaposi's Sarcoma which had previously been seen almost exclusively in elderly men from the Mediterranean. Nobody knew what it was, nobody knew how it worked, nobody understood why just gay men in the biggest cities would be coming down with two highly unusual diseases. Lots of very smart people from several institutions like the CDC and the NIH had good ideas about it, but nobody knew for certain.
When a situation in medicine like this occurs--that is, when a patient has a constellation of signs or symptoms but there is no clear-cut explanation for why the patient is ill--we use the nomenclature of syndromes. As I sometimes tell my patients, calling something a "syndrome" is a way for a doctor to say, "we don't really know what's going on, but we do know something's wrong, and we want to sound smart about it." Whence the "Chronic Fatigue Syndrome" or "Chronic Pain Syndrome." In truth, for most medical conditions that bear the label "syndrome" today we do know the underlying cause. Down Syndrome, for instance is caused by the fetus carrying an extra 21st chromosome in all of its cells; but when Dr. Down was doing his seminal work in the 1860's describing the syndrome, he had no idea about how the syndrome occurred. It wasn't until nearly a century later, in 1959, when the chromosomal abnormality that causes Down Syndrome was identified.
So in late 1981 and early 1982, docs were getting a pretty good idea about the features of the syndrome causing mostly gay men and hemophiliacs to die, but nobody knew what the causative agent was (although several scientists such as Don Francis were already reasonably confident that it was a sexually-transmitted virus). An early clinical description that won out was the unfortunate term "GRID," for Gay-Related Immune Deficiency, but by September 1982 the current term Acquired Immune Deficiency Syndrome gained official recognition by the CDC, and it has been called such ever since.
The causative agent of AIDS was discovered the following year by Luc Montangier of the Pasteur Institute and Robert Gallo of the NIH. Montangier's group referred to the virus as the Lymphotrophic Adenovirus, or LAV, while Gallo called the virus HTLV-III, for Human T Lymphotrophic Virus (the "T" standing for "T-cell"). Immediately it became clear that both viruses could be the same (they were), and a heated scientific dispute broke out over who would receive credit for the discovery. (This remains something of a controversial topic, covered for instance in Randy Shilts's great book And The Band Played On.) The dispute was essentially resolved in 1986 when the virus was dubbed the Human Immunodeficiency Virus. But by that point there had been five years of extensive, fear-mongering press coverage even by the most well-meaning outlets, and the default term during that time was AIDS.
It is hard in the post-Magic Johnson era to recall how much fear surrounded the diagnosis of AIDS between 1981 and 1991 (almost exactly ten years separated the initial reports of the disease with Johnson's announcement that he would withdraw from playing basketball), and while that term does not quite possess the same ability to engender fear in people, it still has the power to stigmatize. And it does so in ways that "HIV" hasn't quite managed to. I was not fully aware of this until I started my HIV clinic during fellowship, and discovered that my patients weren't terrified by having "HIV infection", but they didn't want the word AIDS used around them and they would avoid hearing it at all costs--all this due to the power that the word has in the various communities from which many of these people come.
We could simply do away with the word, fully replacing the concept of "AIDS" with "HIV infection," were it not for a little quirk of CDC and why Obama's use of the term "HIV/AIDS" was technically correct, though unfortunate. AIDS is now considered to be a special subset of people with HIV infection, which the CDC defines as people who have a T-cell count below 200 (the range for people without infection is between roughly 500 and 1500) or those who have developed opportunistic infections like the pneumocystis carinii mentioned above.
I myself have decided in my professional life to call patients who fit that description those who suffer from "advanced HIV," and to eschew using the term AIDS altogether. The disease has enough stigma attached to it; I see no reason for adding to the potential for shame, and the use of the term "AIDS" appears to do just that.