HIV Exceptionalism Is Alive and Well -- and That's Too Bad

January 9, 2013

Paul E. Sax, M.D.

Paul E. Sax, M.D., is director of the HIV Program and Division of Infectious Diseases at Brigham and Women's Hospital in Boston.

Email exchange with a colleague who works at one of our community health clinics:

Guy: Hi Paul, your patient 17432862 [that's a made-up medical record number] came to our walk-in clinic with a rash on her hand. OK that I gave her a week of topical steroids? I know how inhaled steroids interact with some meds -- wasn't sure about the creams.

Me: Could be, good thought. Regardless, a short course should be fine. Tell me, who is the patient? What meds is she on?

Guy: I didn't want to put her name or meds in the email, what with her disease state, HIPAA, etc.

At which point I entered the medical record number into our electronic medical record, figured out who the patient was, and let out a big sigh.

Hey, any sensible clinician understands the importance of patient confidentiality, but at some point these mysterious messages get kind of ridiculous. (I should emphasize that we have a secure internal email system.)

Furthermore, there are several reasons why the above brief email communication is a prime example of how HIV is still treated differently from the rest of the diseases -- infectious or otherwise:

  1. It's a patient well known to me, yet there's no identifying information except for the medical record number. Not a first name, not even initials! Hey, we both know her, right? This will not be a disclosure of her diagnosis!
  2. The clinician correctly identifies a possible drug-drug interaction with HIV meds, but doesn't actually mention any of the antiretrovirals. Too incriminating?
  3. When I ask for the patient's name, he cites as the reason for not including it her "disease state" -- wonder if that state votes red or blue? -- with no mention of HIV.
  4. There's a reference to "HIPAA, etc.", as if HIPAA was created way back specifically for HIV. Wrong.

If we imagine that my patient had diabetes, or hypertension, or even HCV, then none of this covert communication would have occurred, I guarantee it. The implied message in all of this clandestine language, even though we both know the patient, is that there is something shameful about her being HIV positive, something that even health professionals need to communicate about in hush-hush terms.

Could this and related behaviors perpetuate the stigma associated with HIV? You bet.

Because privacy is one thing. But this is different, and kind of sad.

Paul Sax is Clinical Director of Infectious Diseases at Brigham and Women's Hospital. His blog HIV and ID Observations is part of Journal Watch, where he is Editor-in-Chief of Journal Watch AIDS Clinical Care.

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Journal Watch is a publication of the Massachusetts Medical Society.
See Also
Spotlight Series: HIV Stigma & Discrimination

Reader Comments:

Comment by: matshidiso (South Africa ) Tue., Aug. 27, 2013 at 10:05 am UTC
do you think the body lost due to AVR a person may regain it back, i'm worried about my body loos as i have lost fat on my legs
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Comment by: harleymc Thu., Jan. 31, 2013 at 6:22 pm UTC
" identifying information except for the medical record number. Not a first name, not even initials! Hey, we both know her, right? This will not be a disclosure of her diagnosis!"

Email systems are generally insecure whereas patient records have layers of security around them. It's probably good general security to only use patient numbers in emails rather than names.

Loved your joke about disease states.
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Comment by: Tom (Bagram, Afghanistan) Fri., Jan. 18, 2013 at 4:08 pm UTC

Your political comment "wonder if that state votes red or blue?" is irrevalent and detracts from the seriousness of HIV. Your also speculating as to the reasons for maintaining strict email security as being stigma associated, when whether or not its true its good privacy policy.
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Comment by: John-Manuel Andriote (Norwich, CT) Thu., Jan. 17, 2013 at 2:45 pm UTC
Dr. Sax is exactly right about why the way we speak about HIV continues to perpetuate the exceptionalism and stigma associated with this particular microbe since it was first recognized 30 years ago. The language we use to speak about HIV likewise perpetuates stigma. Many still confuse HIV infection and AIDS, not realizing that what has been called AIDS is a term for late-stage untreated HIV disease; HIV and AIDS are not interchangeable. In fact, the President's Commission on the HIV Epidemic under President Reagan recommended not using the term AIDS because it was already obsolete then; HIV disease was the preferred term because it encompassed all stages of HIV infection. But the CDC continues to consider someone with HIV to have "AIDS" if his/her CD4 count has ever once dipped below 200--no matter how many years s/he may have had an undetectable viral load afterward. In fact, most Americans diagnosed with "AIDS" fit the definition only because their CD4 count is below 200. Even home-based testing perpetuates the exceptionalism and stigma of HIV. Why would someone feel such a need for privacy about something so important as his HIV status--if s/he didn't fear the consequences of a positive test result? But I haven't heard this mentioned one time in all the public discourse about home testing--something public health officials opposed back in the 80s.
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