by Shannon Gulliver’09
Coming to Terms with the AIDS Stigma
I recently published an article in The New York Times about my bout with candidal esophagitis, an illness that is known as an affliction of the immunocompromised: It affects patients with AIDS or on chemotherapy, for example. It is, in fact, known as an “AIDS-defining illness”: a patient with candidal esophagitis has AIDS until proven otherwise. I was an ostensibly healthy resident when I got it and had just tested negative for HIV at an annual physical the month before. After getting treated with PO fluconazole, I underwent a malignancy workup that also proved to be negative. My doctors never figured out why I developed candidal esophagitis, but at least the serious etiologies had been ruled out. Throughout the workup (it took weeks because I had to have all scans, blood tests, and appointments on post-call days), I noticed that I was reluctant to discuss what I was going through with my colleagues but had no trouble talking with lay people (non-medical friends and family). What was my hesitancy? In my New York Times article, I talk about the stigma associated with sick doctors and the burden a sick doctor places on his/her colleagues. But I became aware of another kind of stigma that I was trying to avoid: I did not want my co-residents and attendings to think I had AIDS.
I was ashamed of myself for thinking in this way. I was a good New York liberal, as engaged as the next P&S student in the campaign to erase HIV/AIDS stigma and now, in a New York City psychiatry residency, devoting myself to the most stigmatized field in medicine. Yet here I was, in fear of the stigmatization I would experience for an illness I didn’t even have.
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We all know the origins of the AIDS stigma from the 1980s: It was a new and fearsome entity whose transmission is most strongly associated with IV drug use, prostitution, and homosexual sex, three activities that were often carried out in secret and often accompanied by a certain degree of shame on the part of those engaging in them. These clandestine acts were not merely seen as personally irresponsible, they were outlawed by many governments and religions. To be diagnosed with HIV was to be caught red-handed in a stigmatized act. Furthermore, HIV was an illness that while most likely to be transmitted by morally charged mechanisms, still posed a risk to the innocent: neonates, recipients of blood transfusions, health-care workers. The illness quickly took on the following connotations:
- HIV/AIDS as punishment for immoral behavior
- HIV/AIDS as crime (in relation to innocent or guilty victims)
- HIV/AIDS as war (in relation to a virus that must be fought)
- HIV/AIDS as horror (infected patients as demonized and feared)
- HIV/AIDS as otherness (a disease of those members of society that are set apart)[i]
Individual states sprung into action, making confidential testing available so that patients would not be deterred from getting tested, and providers, employers, and insurance companies could not discriminate against patients based on their “status.” Status indeed: It became the official code word for medical professionals to describe an HIV-positive patient. The unofficial code word became “High Five,” used as slang by young doctors, the way they might have used a mnemonic for a medical school exam a few years earlier in their careers. Special counseling, consent forms, and result-retrieval protocols were implemented to varying degrees in different states. In some states, at some hospitals (Columbia, for one), doctors could not look up results in the computer system but rather had to supply a code to a special results telephone number and exchange the code for the “status.” More recently, a special section of the Columbia computer system that is marked “sensitive” is where HIV results can be found.
These confidentiality measures were not developed solely to circumvent stigma; they served to ensure that patients would receive their diagnosis in an appropriate setting, rather than overhearing providers discussing it amongst themselves in a hallway or receiving the news in a voicemail. Protecting patients from stigma and inappropriately delivered diagnoses is a noble aim, but these measures have become onerous, and even detrimental, to patients in two ways.
First, the cumbersome nature of the HIV testing process dissuades doctors from offering it, particularly on busy inpatient services or in hectic outpatient clinics. It takes time to obtain written informed consent (more time than obtaining a consent for a surgical procedure does), to perform pre-test counseling, to fill out special requisition forms, to send the sample to a specific lab area, to phone in for the results, and to perform post-test counseling, which, if the test is positive, is a significant undertaking. Of course, if a patient asks for the test, most residents do perform all of these steps diligently. But when it comes to offering the test unsolicited, I have seen many residents (myself included) fail to do so. Or offer it but then get a look of horror from the patient, as though offering the test is a sign that the doctor suspects the patient of moral decrepitude.
The testing rigmarole is a barrier to diagnosis, but it is also a barrier to dampening the stigma surrounding the disease. By tiptoeing around the diagnosis as delicately and circuitously as we did 20 years ago, we doctors are perpetuating its “status” as a taboo. The division of my hospital dedicated to HIV medicine is still called the Center for Special Studies, further shortened to “CSS.” Why is HIV still “special?” How is it different from hepatitis C, hepatitis B, or syphilis, all chronic and debilitating diseases that are commonly transmitted through IV drug use or unprotected sex?
I don’t have an answer, and my ultimate response to my own misgivings about stigma was, I suppose, definitive: By publishing a story about my “AIDS-defining illness” in The New York Times, I was choosing not to keep it a secret from my colleagues or anyone else. I am proud of that personal step against the AIDS stigma. But then again, I made very clear in my article that I had indeed tested negative for HIV. It’s one thing to crusade for a cause like HIV stigma when it’s a public health issue; when it becomes a personal health issue, righteousness is tougher to attain.
Shannon Gulliver is a second-year resident in psychiatry at NewYork-Presbyterian/Cornell. Her article published June 28, 2010, in the New York Times “Cases” column can be found here.