Correspondence

More on Disclosure of AIDS in Celebrities

N Engl J Med 1993; 328:583-584February 25, 1993

Article

To the Editor:

In the Nov. 5 issue of the Journal, Gellert et al.1 wrote about the benefits of the disclosure of human immunodeficiency virus (HIV) infection by celebrities, saying that “such disclosures have an impressive effect on the public health.” As evidence of this impressive effect, they demonstrate graphically that anonymous HIV testing increased dramatically after the disclosure, voluntary or involuntary, of the HIV status of such celebrities as Rock Hudson, Earvin “Magic” Johnson, and Arthur Ashe. Their graph, however, traces not only the increase in testing after such disclosures, but also the number of tests that were positive. Notably, the line for the number of positive tests remains flat throughout the period of observation, 1985 through 1992, regardless of the fluctuations in testing. This pattern suggests that such disclosures increase testing among those at low risk for HIV infection, but not among those at high risk; regardless of the number of people tested, the number of positive tests remains constant. More disturbingly, instead of suggesting an increased public awareness of the risk of HIV, their data suggest that public health campaigns have not effectively communicated how HIV is transmitted and that the population is still prone to hysteria. Public awareness in the form of hysteria cannot be construed as a positive effect of disclosure. . . .

Amy Fairchild Carrino, M.P.H.
Ronald Bayer, Ph.D.
Columbia University School of Public Health, New York, NY 10032

1 References

1. 1

   Gellert GA, Weismuller PC, Higgins KV, Maxwell RM. Disclosure of AIDS in celebrities. N Engl J Med 1992;327:1389-1389
   Full Text | Web of Science | Medline

To the Editor:

I must take issue with the letter by Gellert et al. The authors' intimation that the public health outweighs a person's right to privacy and confidentiality of medical care is very disturbing.

No one would deny that the disclosure of HIV infection by a celebrity has had a tremendous impact in educating the general public about HIV infection and getting those at risk to seek counseling. After the disclosure by Magic Johnson, requests for counseling and testing at Boston City Hospital tripled overnight, and they remain at a level double that of one year ago.

The authors seem to forget, though, that Magic Johnson was the only HIV-infected celebrity to disclose his status willingly. Given the choice, Arthur Ashe would have preferred that his illness remain out of the public eye. News of the HIV status of Rock Hudson, Liberace, and Anthony Perkins came only when they were dying or already dead -- not what most would consider a voluntary disclosure.

It is not difficult to understand why these celebrities would avoid disclosing their HIV infection publicly. The recent tribulations of Magic Johnson demonstrate that celebrities are not immune to discrimination and stigmatization. As an HIV-infected physician and the AIDS Policy Advisor for the City of Boston, I have certainly felt the negative consequences of the public disclosure of my seropositivity.

Many people at risk refuse to undergo HIV testing for fear that the test results will not be kept confidential. There is an even greater disincentive for celebrities to ascertain their HIV status, since the public seems to think that such people have less of a right to privacy. The suggestion that their rights to confidentiality may be outweighed by the greater public health only serves to deter public figures further from seeking appropriate HIV counseling and testing.

Physicians caring for a person with HIV, regardless of the patient's celebrity status, must do what they think is in the patient's best interests. Anything less would be to compromise the care of that person.

Lawrence M. Barat, M.D.
Department of Health and Hospitals, Boston, MA 02118

Author/Editor Response

The authors reply:

To the Editor: Ms. Carrino and Dr. Bayer note that the number of positive tests remained flat throughout the period reported in our letter, regardless of testing levels. This is correct and reflects the fact that Orange County is not an area of high HIV seroprevalence. Despite an estimated HIV prevalence of only 1 in 200 to 250 people, testing the general U.S. population for HIV antibody is nonetheless encouraged as a strategy of disease control. The epidemiology of AIDS in Orange County still centers primarily on a single high-risk category, men who have sex with men. There is not a large group of injection-drug users or a disproportionate prevalence of infection among people of color. These characteristics suggest that many people at lower risk in Orange County may be seeking a test after a disclosure of AIDS by a celebrity. Such may not be the case in other areas, such as the Northeast. More important, testing does not serve only the objective of identifying infected people; it also leads to effective counseling and preventive education. If people are brought into health care systems and educated about risk and HIV prevention as a result of a disclosure by a celebrity, that is itself a positive effect. We do not see how the data we presented indicate a failure to communicate effectively how HIV is transmitted or that the public response is one of manifest hysteria.

Dr. Barat states that we suggest that greater public health considerations outweigh a person's right to privacy and confidentiality of medical care. We did not state this viewpoint, nor do we share it. On the contrary, a person's prerogative to decline disclosure must be respected. Unauthorized disclosure is illegal and immoral. When it is voluntary, however, the disclosure of AIDS by a celebrity can have a powerful effect on the public health. Therefore, our recommendation was that physicians encourage, not coerce, celebrities to disclose their HIV status. Dr. Barat's point that disclosure carries with it the risk of discrimination and stigmatization is inarguable. The decision to make a disclosure and withstand these hardships is a personal one, and physicians should not obscure the harsh realities involved. At another level, however, Dr. Barat's argument is defeatist. If social, cultural, and political leaders do not come out and use their influence to educate the public about AIDS, shatter misconceptions, and promote compassion, we will never escape the regressive thinking that has shaped our social response to this disease. Between the extremes of patient confidentiality and public health utilitarianism, is there no possibility for a humane, intelligent balance? When will our response to this epidemic mature so that policy issues do not always go to polarized extremes?

George A. Gellert, M.D., M.P.H., M.P.A.
Roberta M. Maxwell, Ph.D.
Kathleen V. Higgins, B.A.
Penny C. Weismuller, Dr.P.H.
Orange County Health Care Agency, Santa Ana, CA 92701