Spring 2012

HIV, Stigma & Confidentiality



You enter a patient room or curtained area in the emergency department to discuss the patient's care. The patient is HIV positive. The patient has two visitors and they are having a calm, friendly conversation.

Do you?

  1. Ask the patient if it is okay to speak about her care with others present.
  2. Ask the visitors to leave the room before speaking to the patient.
  3. Start talking about her HIV medications with the visitors present.

The Duke Legal Project has represented many clients whose HIV statuses were inadvertently disclosed by physicians in emergency department waiting rooms or curtained exam areas. Although unintended, these unauthorized disclosures of HIV status have devastating consequences for our clients—your patients. Our clients have been shunned by their families, refused a hug or touch, and forced to use separate dishes and utensils. They have been thrown out of churches and fired from jobs. They have faced community harassment as word of their HIV status spread. This vilification happens all too frequently—even today.

For a physician, patients with HIV may seem like many other patients with a serious illness. But HIV is not just another serious disease. It carries with it a unique stigma that can insidiously affect almost every aspect of a patient's life, often completely cutting them off from social and familial ties. As a consequence, most people with HIV keep their diagnosis a secret, hidden from employers, co-workers, members of their church, neighbors, family and friends.

Current Misconceptions about HIV Transmission:

Enduring public misconceptions about HIV transmission are at the root of much HIV stigmatization. Americans have learned a great deal since the beginning of the so-called "AIDS Epidemic." But the learning curve flattened out in the early 1990s and many myths about modes of transmission stubbornly remain.2 Consider this, in 2011:
  • One in four Americans still believes that HIV can be transmitted by sharing drinking glasses with a person living with HIV.3
  • One in six Americans believes HIV can be spread by toilet seats.
  • 12% of Americans think HIV can be spread by swimming in a pool with someone with HIV.4
Americans with lingering misconceptions about how HIV is transmitted are more likely to be uncomfortable working with someone with HIV/AIDS.5

The Role of Moral Condemnation:

A recent Kaiser Family Foundation survey asked participants to agree or disagree with this statement: "In general, it's people's own fault if they get AIDS."6 The number of people who agree with that statement has increased since the 1990s. This blame-the-victim mentality works to maintain HIV stigma.

The reasoning fueling this stigma is multi-faceted, complex, and fluid—often layered atop stigmas associated with homosexuals, prostitutes, intravenous drug users and those who engage in casual sex. The interconnected nature of these stigmas deepens the prejudice against those with HIV.7


North Carolina law specifically protects HIV confidentiality.8 It is a crime to violate the NC HIV confidentiality law.9 Moreover, unauthorized disclosure of a patient's confidential information constitutes medical malpractice.10

North Carolina statutes limit disclosure to the following circumstances:
  • When the person's written consent was obtained;
  • When necessary to protect the public health, as determined by public health officials;
  • When made for research purposes as long as no identifying information is released; or
  • When made pursuant to subpoena or court order.11
HIPAA adds another layer. To be legal, any disclosure must satisfy North Carolina law, even if HIPAA seems to give the green light. HIPAA gives way when state law is more protective of privacy. HIPAA demands that "reasonable safeguards" be taken to protect privacy and that only the "minimum necessary" be disclosed.12 Naturally, disclosures for treatment or payment purposes are allowed. But, HIPAA permits limited disclosures of "directly relevant" information to relatives or friends involved in the patient's care or payment.13 Physicians can't assume, however, that someone accompanying a patient to the ED is involved in the patient's care.

Under HIPAA, if the patient is present, the provider must get the patient's consent, give the patient an opportunity to object, or be able to "reasonably" infer, using "professional judgment" that the patient consents to having others present.14 If the patient can't be consulted, disclosure must be in the patient's "best interest."15 Knowing how closely patients guard their HIV status, inferring consent is rarely if ever reasonable.


The devastating consequences of unauthorized disclosures can be avoided by taking these simple precautions:
  • Always assume someone else can hear you in waiting rooms or other public areas.
  • In semi-private or public areas, such as emergency departments or shared rooms, be discreet when discussing HIV or other sensitive diagnoses to prevent inadvertent disclosures to third parties.
  • Always assume the patient has not disclosed his or her HIV status to anyone.
  • Never discuss HIV status in front of family and friends without the patient's explicit authorization.
  • When sensitive health information must be discussed, ask family or friends to leave the room before talking to your patient.
  • Whenever possible, have discussions in a private, soundproof room.
  • If a soundproof room is unavailable,
    • consider whether discussion of HIV is even necessary, and if it is,
    • make every effort to lower your voice so others cannot overhear.
  • Do not include references to sensitive protected health information in phone messages.
  • Do not review medical files in front of other patients.
  • Secure medical files when not in use.
1Answer: (B)
2KAISER FAMILY FOUNDATION, REPORT, HIV/AIDS AT 30: A PUBLIC OPINION PERSPECTIVE 1, 6 (June 2011), available at http://www.kff.org/kaiserpolls/upload/8186.pdf.
6KAISER PUBLIC OPINION SPOTLIGHT, ATTITUDES ABOUT STIGMA AND DISCRIMINATION RELATED TO HIV/AIDS (Aug. 2006) 8, available at http://www.kff.org/spotlight/hivstigma/upload/Spotlight_Aug06_Stigma-pdf.pdf.
7Lisanne Brown, Lea Trujillo, & Kate Macintyre, Interventions to Reduce HIV/AIDS Stigma: What Have We Learned? Horizons Program - Tulane School of Public Health & Tropical Medicine at 3 (2001).
8N.C. GEN. STAT. § 130A-12.
9N.C. GEN. STAT. § 130A-25.
10Watts v. Cumberland Cty. Hosp. System, 75 N.C. App. 1, 330 S.E.2d 242 (1985).
11N.C. GEN. STAT. § 130A-12. See statute for full list of disclosure exceptions.
12U.S. Dep't of Health & Human Servs.Guidance, Summary of the HIPAA Privacy Rule, 1, 2 (May 2003), http://www.hhs.gov/ocr/privacy/hipaa/understanding/summary/privacysummary.pdf.
1345 C.F.R. § 164.510(b)(1).
1445 C.F.R. § 164.510(b)(2).
1545 C.F.R. § 164.510(b)(3).

Carolyn McAllaster (B.A., J.D., University of North Carolina at Chapel Hill) is a clinical professor of law at Duke University, and is the founder and director of the Duke AIDS Legal Project and the Duke AIDS Policy Clinic. Professor McAllaster is also the Project Director of the Southern HIV/AIDS Strategy Initiative (“SASI”) and co-chair of the North Carolina AIDS Action Network.

McAllaster was a litigator in private practice in Durham, NC, for thirteen years prior to joining the Duke Law School faculty in 1988. She has served as an administrative hearing officer for the N.C. Department of Human Resources and was in the inaugural class of state court arbitrators in Durham, North Carolina in 1987.

Professor McAllaster has taught pre-trial and trial advocacy courses in addition to clinical law courses focusing on child advocacy and AIDS and Law. She is the author of several articles and chapters in books, including "Legal Issues for HIV-Infected Children" in Textbook of Pediatric HIV Care (2005), and co-author of "Issues in Family Law for People with HIV" in AIDS and the Law, 4th ed. (current Supplement, 2012). McAllaster is a frequent speaker on AIDS and the Law issues.

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