Is confidential named HIV reporting a proper approach to fighting the epidemic in California?

UCLA School of Public Health News Letter 19(3), 5, Fall 1999







By Ralph R. Frerichs, D.V.M., Dr.P.H.

 By Walton Senterfitt, R.N., M.PH.


What's in a name? A lot, when it comes to an unrecognized infections disease that spreads by intimate person-to-person contact. While not difficult to prevent if detected, the human immunodeficiency virus (HIV) differs from other communicable diseases in two respects. First, the virus is closely identified with gays, and has become entwined in gay political concerns such as open identification, discrimination and social acceptance. Second, those who harbor the virus have become vocal and organized. They serve as a strong lobbying force against legislative actions that limit their personal freedoms, which sometimes involve viral transmission.

HIV remains a cunning foe, difficult to treat and rid from the body, but not hard to prevent if the identity of the HIV-infected person is known. In general, health departments in the majority of states that now have named HIV reporting (31 at last count, but not California) make good use of the identity of HIV-infected persons. The gathered data are easily checked for duplication in count, thereby improving the quality of the surveillance system. Contact is maintained with persons who are infected and their susceptible spouses or sexual partners. Such susceptible persons can then protect themselves from HIV by avoiding sexual or blood contact, or by reducing their risk with condoms, withdrawal or use of clean needles.

For HIV-infected persons, treatment is an expensive long-term undertaking that requires follow-up and support beyond what is offered by busy physicians. Having names helps health departments maintain such contact and encourages public support for the cost of therapy. Finally, in the case of pregnancy, having a name allows medical and public health workers to ensure early treatment, necessary to preserve the life of the newborn child. For these reasons, I strongly support named HIV reporting, along with confidentiality safeguards that are standard when dealing with sexually transmitted diseases.


One-third of HIV-infected persons in Los Angeles County are not aware of their infection. Of those who do know, at least 25 percent are not receiving care. Named reporting will do almost nothing to help identify and assist these persons, who contribute most heavily to the continued spread of HIV.

A small but significant proportion of individuals will decline testing or services if their names are to be confidentially reported to an agency of the state. The actual risk of disclosure by public health staff is infinitesimal, but this is beside the point. Fear, regardless of whether it is founded in reality, is the main barrier to testing and care. Public health must address the continued social stigma underlying these fears. Instead, advocates of named reporting have fueled fear, even if unintentionafly. They have tactically allied with political forces indifferent or hostile to HIV/AIDS care and to the people who are living with AIDS. Such tactics alienate the HIV-infected and affected communities, whose massive involvement in advocacy, prevention and social support has been a powerful engine of progress against HIV.

Fundamentally, emphasizing named reporting diverts our attention from what would really work:

  • Extend access to care to all, for real.
  • Vastly expand voluntary HIV testing, using new technologies and new venues.
  • Establish sensitive, community-based partner counseling and referral services.
  • Create acceptable transrnission-prevention programs for HIV-infected persons.
  • Supplement surveillance with sampling and modeling to periodically estimate the prevalence and incidence of HIV in the total population.

With treatment advances rendering AIDS ever more arbitrary, we do need expanded surveillance to monitor and plan.  A non-name-based unique identifier system can meet this need, with only modest loss of efficiency.


Frerichs is professor and chair of the Department of Epidemiology at the UCLA School of Public Health. He can be reached at


Senterfitt is a practicing epidemiologist and health planner, longtime AIDS activist and Person Living With AIDS. He can be reached at